Mystery Diagnosis
Go  |
New |
Find |
Notify |
|
Reply |
|
Admin |
New PM! |
Junior Member
Registered: 05-15-07
|
Discovery Health Channel is searching for people to tell their stories on the 6th season of MYSTERY DIAGNOSIS. Each episode tells the stories of people who suffered with ailments that, because of their rarity, complexity or similarity to other illnesses, went undiagnosed for months or years before a physician could unravel the clues and nail down an accurate diagnosis.
Please send an email to MysteryDiagnosisCasting@gmail.com and indicate what your illness is, what state you reside in and the location of your diagnosing doctor, and tell us how your life is different now that you have been diagnosed.
(Please note that the producers are not doctors and can not diagnose you)
|
Junior Member
Registered: 01-29-08
|
I myself have a mystery diagnosis that was solved about four years ago. I have had bladder problems for the majority of my life and have seen three different urologists but they did not have any answers and all of the tests have came back normal. By the time I was in Junior high school I thought that I had outgrown my bladder problems but they gradually started to reappear. I have always had burning sensations on the inside of the bladder when I would lay down or sit for long periods of time. By the time that I had completed my first year of college all of my old urinary symptoms had come back worse than ever, burning sensation inside the bladder, incontinence, bedwetting, and so on. Finally I decided to see a Gyencologist to see if they had any answers as to why this was happening. When I mentioned the symptoms to my the genecologist she examined me completely down under and immediately recognized what was causing me nearly 20 years of agony. She diagnosed me with Interstitial Cystitis, a bladder disorder that affects the lining of the bladder. I am now on Elmiron the medicine for Intersitial Cystitis and a diet for the disorder even though I still have occassional flare ups. Since I have been on Elmiron I have not peed the bed, my incontinence is almost completely vanished, and
|
Junior Member
Registered: 04-19-08
|
Please pick me for my story. My mystery diagnosis has not been solved yet but we are well under way to do so. So now i am posting a blog here to hopefully get a response from the show about the guy who had gasto-intentional problems,a blothcy rash on his fore-arms, and headaches with joint pain. Please if any one couldhelp me i would be greatly apperciative. I should have a post sortly after this is written so you can reply.
|
Junior Member
Registered: 04-21-08
|
I myself do not have a mysterious illness it is my sister. She is diagnosed to have acute pancreatities but they aren't sure, and she has had this for many years and is in and out of the hospital with bad bouts of vomitting and its very disheartening to watch and see that the doctors can not find out what it is. She had gastric bypass surgery many years ago and it took years for her to develop these symptoms and she is getting worse as time goes by. The doctors want to do all kinds of surgery but they don't know if it will work and she is on her own machine at home so she don't have to keep going to the hospital for fluids. She was adopted and is not able to find out what her medical history is.
|
Junior Member
Registered: 01-29-08
|
Along with what I have written so far about my diagnosis that went undiagnosed for so many years I had a diagnosis of Asperger's Syndrome, a disorder that falls into the category of Autism Spectrum disorders as a young child and this masked my bladder problems and most of the urologists thought that my bladder problems were related to this. This made me really upset because from a young age I knew that there was something else that was not quite right about me. These doctors would also just give me antibiotics for infections and the symptoms would sometimes still be there although infections make things worse. I was always told that some girls are more prone to urinary tract infections than what others were and so on and that there was nothing wrong with me. I had every urinary test done under the sun and they found nothing wrong. Even while I was at school teachers would literally get fed up with me having to run to the bathroom constantly. On top of my other symptoms by the time I got to high school I at times developed the inability to pee when I really needed to go and like I mentioned earlier I went to another urologist at age 19 years old and he performed a cystoscopy which revealed some irritation but told me that it was nothing to worry about. Finally about three years later at the age of 22 during the spring of 2004, I happened to come accross Dr. Laudenbach who is now my gynecologist and pondered on making an appointment since I had never had a female checkup. I called and made an appointment for one month later, but still I was worried that she would be just like the other doctors that I had seen for my bladder problems. I wanted to see if there was anything in the surrounding area that may have been causing my bladder problems. when I first went to see Dr. Laudenbach she listened to everything that my mother and I had to say and did a complete female exam on me along with a urinalysis. When my mother and I first mentioned the symptoms to Dr. Laudenbach she asked if anyone had ever mentioned of the fact that I may have intersititial cystitits and I told her no. That very day Dr. Laudenbcah diagnosed my problem and even put me on my current medication, and I am very thankfull that I went to see her for that. For reasons like this I feel like I would be a great canidate for the next season of mystery diagnosis. This is what I have to say to patients. You know your body better than anyone else and do not be afraid to speak up even if it means getting a second opinion. If others around you say there is nothing wrong do not listen to them and continue to take my advice.
|
Junior Member
Registered: 04-24-08
|
Good Morning,
I have had a mystery issue since I gave birth to my son a little over 2 years ago. I was diagnosed with pseudohypoparathyroidism in the beginning, however, my new endocrinologit (that I saw yesterday) lifted that diagnosis because he is not conviced. I go 4 or 5 months feeling fine and then all of a sudden my calcium level drops and I am in and out of the hospital again getting calcium infusions - not to mention even with an infusion the next day my calcium will be low again. This has been happeneing for 2 years and no one can really figure out why, I was even told that I was a mystery yesterday by my endorcinologists which doesn't make me feel any better. I am supposed to get a PTH infusion test within the next couple of months and that will determine whether or not I do have pseudohypoparathyroidism (which is usually hereditary and no one in my family has ever had such a problem.) If it comes back that I do not have that the doctor said he just doesn't know, which I would hope at that point he would try to figure out what the underlying cause is. It definitely makes me nervous that I have had this problem (hypocalcemia) for over 2 years and it could potentially be caused by something other than what was originally thought! I have little 2 year old boy to take care of and want to be healthy not only for myself but for him!
|
Junior Member
Registered: 04-25-08
|
I have been suffering for about a year without a firm diagnosis. My doctors have tested for many diseases and come up with dead ends. I went to the Mayo Clinic in Arizona in January and their best guess is extraintestinal manifestations of ulcerative colitis (very rare and not sure that is what it is) Icolitis has not flared up in many months. Symptoms include, platelets that have increased over the past 5 years from the high 400,000's to over 1.4 million, respiratory distress, inflammation and narrowing of the trachea, runny nose, excessive mucus, chronic cough, irritation of the eyes, rashes on both hands. Last May it began with unbearable headaches and swelling in my face. Those symptoms are gone. Mayo put me on high doses of prednisone which is not a good place to be. I still have mucous and eye irritation and some coughing though,my last labs showing the platelets down to 775,000 from over 1,000,000 3 weeks prior. I need SOMEONE to help me figure out what this is. I am only 22 and previous to all this have been very healthy.
|
Junior Member
Registered: 04-27-08
|
I have lived with what I believe is "dysfunction of the belch reflex" since I was about 12 (I am 21 now). It may sound silly, but not being able to burp causes me severe discomfort. Since I can't release the gas, I am constantly making gurgling noises through my esophagus--it's as if a gas bubble is shooting up, ready to escape, but cannot, and comes out in the form of an unsatisfying gurgle. It is very embarassing and painful. I have found many other people like myself via the internet and other message boards, and all of us remain undiagnosed by our gastroenterologists (who only laugh when we say we can't burp). we are all so severly bloated as well! please give us your time and attention and put this unfortunate condition to rest!
|
Junior Member
Registered: 04-27-08
|
My 24 yr.old son started to vomit March 16th this year. He eats and it comes right back up. The same with any liquids other than Mountain Dew (pop) or we just found out, apple juice. He was taking Ultram, His Dr. thought this was the problem.It was discontinued 2 weeks ago. He is still vomiting. He takes Vicodin (headaches, he rolled a jeep in Sept. of 2007), he also takes Zanaflex for the headaches.When he was younger (8, I think), he was diagnosed with GERD from a nasal ph sensor, and used Propulsid. He has only had 2 BM's in the last 6 weeks also. He said he thought they looked normal. I have taken him to 2 different E.R.'s because I am seriously worried. He had blood tests done about 2 weeks ago. All I could see was a low TSH. At the first E.R., they checked his urine and said he had a UTI and gave him doxycycline. Told him to take Prilosec for 2 weeks, get Citrate of Magnesia and use it and also gave him an RX for Phenergan. They also did a test to culture his urethra saying he may have an STD (gonorrhea or chlamydia!). This is confusing to us (and him).They also gave him a "gastric cocktail" after having him let a tablet dissolve on his tongue (I don't remember what this was but might if I heard it again). This did no good. Friday I took him to another E.R. and the Dr. thought we were lying! He said if you haven't eaten in 6 weeks, you should be dead! They took his blood and said he did not have the UTI (he used the medication 3 days), no STD's, no infections, he wasn't dehydrated (they had done a urinalysis and it said he was), but did have low potassium and gave him 4 pills with apple juice (how we knew he could take it and not vomit). They did an x-ray and said it looked normal, no stomach problems, no intestinal problems, no blockages or stuff in it, no tape worm (apparently, we live in the wrong area [Colorado]). He has not had any surgeries in well over 8 years (adenoids, tonsils, deviated septum, turbinates reduced). He has lost over 70 pounds. He used to weigh 305 and now weighs 240. I realize being less fat is good, but this doesn't seem to be the way to lose it. He smokes a half pack a day I think he said. He doesn't do any form of non-prescribed drugs (except OTC's for headaches) other than alcohol socially (a beer once a month usually). All I have noticed is he feels way too full after eating (even if it is just one cracker) and he starts to burp a few times, then, up it comes. He says he doesn't feel nauseous or anything else, it just happens. The only other thing I notice is that his teeth are bad from the acid reflux (dentist says this) and he wears a tongue piercing and lip piercing. What should I do (or him, I mean)? I am very fearful for him and do not know what to think or what happened or is happening to him.
|
Junior Member
Registered: 04-06-08
|
If your story gets picked, do you get paid?
|
Junior Member
Registered: 04-29-08
|
Hi, my son is 6 1/2 years old and has no diagnosis. He just recently began walking with help and is non-verbal. He's been tested for numerous things and all have come back negative/normal. Here's the link to a website I created for him and explains everything. If you have any questions please email me. http://www.caringbridge.org/visit/chasecarpenterThank you. |
Junior Member
Registered: 04-04-08
|
I have a bafiling mystery that no one can figure out and i need it solved. I cant make my daughter go through this anymore. I have been sick now for almost a year and a half and i have been suffering with bizzare symptoms that baffel anyone. If anyone can help me i would appreciate it!
|
Junior Member
Registered: 05-08-08
|
My name is Emily Williams and I am a college student in Columbus, Ohio. At the beginning of April, my father came down with a high fever, and an extremely painful headache. Every night, he would wake up so sweaty, that he went through a least 3 sets of clothes at night. Then, around April 20, 2008, my fathers' eyes became sensitive to light, and he would wear sunglasses around the house. Then, shortly after that, his left eye began to droop. My parents went to the family doctor, and was told that he had Spinal Meningitis. His symptoms persisted, and was advised to go to the emergency room by our family doctor. The emergency room doctor did a spinal tap and confirmed that it was Spinal Meningitis, not Bacterial Meningitis. However, his symptoms worsened. On April 26, he awoke in the morning and was not able to see out of his left eye. My mother rushed him to an emergency Ophthalmoligst, and he saw swelling of the optic nerve. He insisted that my dad go to the emergency room immediately, because he know that this condition with his eye was associated with his brain. My father walked into the emergency room. That night, he was admitted into the hospital. When I came to see him at about 8:00pm, he was unable to walk. That weekend, I almost lost my father. He completely lost function in his left side of his body. After being put on an Antiviral IV, his condition worsened further. On Monday, April 28, 2008, my father was moved to the Neuro ICU. My dad went through 3 CT scans, an Angiogram, and an MRI over that weekend. Every test turned out completely normal. However, on Monday, my father was ordered by the Neurologist to receive another MRI. That MRI showed a difference from the MRI over the weekend: there was a lesion in the Thalamus of his brain. My father got every blood test that was given to patients in the hospital. Doctors thought it was either Lyme Disease, West Nile Virus, a Stroke, Herpes Simplex virus, Diabetes, everything. Finally, after about a week of tests, the Neurologist finally came to a decision. They diagnosed my father with Acute Disseminated Encephalomyelitis (ADEM). ADEM is almost always found in children following a viral infection, and vaccination from measles, mumps, or rubella. No doctors in Columbus have ever seen this disease occur in a 55 year old. Also, ADEM is extremely rare, only affecting a small percentage of people around the world. ADEM causes stroke-like symptoms, but is not classified as a stroke. ADEM is also sometimes misdiagnosed as Multiple Sclerosis, or vice versa. Currently, my father is in inpatient rehab re-learning how to walk, use his arm and hand, and the left side of his face again. Progress is slow, but it is slowly coming along. I would really like my father to be on the show to share his experience with this disease. I think it would be extremely beneficial to expose the public to this disease that could affect their children or even older friends and family after their routine shots or the common cold. I would love to raise awareness about this condition, and ultimately prevent this disease from happening to someone else again.
|
Junior Member
Registered: 01-29-08
|
quote: Originally posted by specialneedsmommy: Hi, my son is 6 1/2 years old and has no diagnosis. He just recently began walking with help and is non-verbal. He's been tested for numerous things and all have come back negative/normal. Here's the link to a website I created for him and explains everything. If you have any questions please email me. http://www.caringbridge.org/visit/chasecarpenterThank you.
|
Junior Member
Registered: 05-12-08
|
Illness: Coronary Artery Fistula (Right Coronary Artery to Left Ventrical Fistula)
State of Residence: Hawaii
Location of Diagnosing Doctor: Hawaii
I am a 37 year old female of Hawaiian/Chinese descent and I live on the island of Maui in the State of Hawaii. I had always been told that I had a heart murmur due to having had rheumatic fever as a child. I was put on prophylactic antibiotics (penicillin g) as a child and would experience shortness of breath, tiredness, chest pain and dizziness from time to time throughout my childhood. I also suffered from frequent and severe nosebleeds as a child. In my teens through my early thirties, I experienced cycles of severe migraine headaches and just before my diagnosis, my symptoms of shortness of breath, fatigue, chest pain and dizziness became more and more apparent especially during times of physical and emotional stress.
Over the years, I would intermittently bleed from my ears for no apparent reason and it was linked to ear infections. I also continued to have intermittent nose bleeds that were also unexplained. In 2006, I began experiencing new, more severe migraine headaches that would disable me for hours, sometimes days at a time, and went to see my neurologist for assistance. The neurologist wanted to try a new medication with me but, due to my history of heart murmur, he required a cardiac clearance before prescribing the new medication. During the echocardiogram, the technician observed what he called a shunt during the test and called the cardiologist on duty in to observe. Two cardiologists, tentatively diagnosed me with a coronary artery fistula, but due to the relative rarity of the condition, decided to send my records to a pediatric cardiologist for another opinion. Upon his review of my records, I was scheduled for an angiogram in order to “map” the flow of the fistula.
I underwent a cardiac catheterization on March 7, 2006. The cardiologist observed a “giant” RCA to LV fistula and the consensus was to undergo surgery to close this fistula. I was scheduled for surgery and underwent open heart surgery through median sternotomy on May 8, 2006. The surgery which took 7+ hours was observed by several medical personnel due to it’s rarity. After the surgery, my heart rate continued to be elevated and I experienced heart rates in excess of 160bpm while I was at complete rest. My medication was being adjusted in an attempt to bring my heart rate under control, but it was unsuccessful and I developed a cardiac tamponade physiology. I was returned to the ICU and underwent surgery to relieve the tamponade on May 12, 2006. The surgeon tried to extract the fluid using a needle, but due to my physiology and the location of the fluid, they were unable to use a needle and had to re-open my sternotomy. Serosanguenous fluid under pressure was forcibly ejected from my chest cavity upon entering my chest and another 450mL of blood and fluid was removed from around my heart at this time. Recovery from the surgery and tamponade was complicated by an infection of my chest incision, and pneumonia. I developed keloid scarring, which requires treatment (steroid injections) to prevent adhesion of scar tissue to the underlying musculature. My sternum did not heal completely following the surgery and I continued to experience pain due to sternal instability.
May 2008: Two years after the initial surgery, and my sternum has stabilized. I am no longer short of breath, do not bleed from my nose or ears, nor do I experience dizziness. Best of all, since the surgery, I have not experienced any migraine headaches.
|
Senior Member
Registered: 05-07-08
|
I don't have a story. I just happened to log on and found this forum. "Mystery Diagnosis" is such a fascinating show, I can never turn away once I start watching an episode. The show truly demonstrates how we need to be our own advocate, especially when all we hear is, "Oh, it's nothing." It takes a lot of courage for people to post their stories.
Blessings,
Cindy
|
Junior Member
Registered: 05-26-08
|
quote: Originally posted by earache99:
I myself have a mystery diagnosis that was solved about four years ago. I have had bladder problems for the majority of my life and have seen three different urologists but they did not have any answers and all of the tests have came back normal. By the time I was in Junior high school I thought that I had outgrown my bladder problems but they gradually started to reappear. I have always had burning sensations on the inside of the bladder when I would lay down or sit for long periods of time. By the time that I had completed my first year of college all of my old urinary symptoms had come back worse than ever, burning sensation inside the bladder, incontinence, bedwetting, and so on. Finally I decided to see a Gyencologist to see if they had any answers as to why this was happening. When I mentioned the symptoms to my the genecologist she examined me completely down under and immediately recognized what was causing me nearly 20 years of agony. She diagnosed me with Interstitial Cystitis, a bladder disorder that affects the lining of the bladder. I am now on Elmiron the medicine for Intersitial Cystitis and a diet for the disorder even though I still have occassional flare ups. Since I have been on Elmiron I have not peed the bed, my incontinence is almost completely vanished, and
Mystery diagnosis is one of my favorite shows and just recently my own diagnosis of interstitial cystitis was made. This is the first time I have come on the message boards and your post was the second post I saw, which I found so oddly coincidental. Anyway, I estimate that I have suffered symptoms of IC since my first year in college, when I remember painfully urinating out blood for weeks. It is possible that I had symptoms before, but I don't remember. I had been misdiagnosed with urinary tract infections to the point where I was on antibiotics about every 3 weeks to 2 months for a year and a half. Every doctor would ask about hygiene and my sexual practices and because I was a college-age sexually active female, they just kept assuming that I had a UTI. I would urinate lots of blood and sometime pass blood clots in my urine. I was in SO much pain and the story goes on and on, but eventually after college the most significant symptoms had subsided, but I would still have to get up multiple times in the night to go to the bathroom. I was convinced that I suffered recurrent UTIs, so I would make sure to always urinate after sex, upon waking up every morning, and to keep myself very clean. I also noticed that I would have to go the bathroom multiple times in a row right after drinking orange juice or tea. I would joke that it was like walking a dog, and that once I had to go, I'd have to go about 3 - 5 times in a row before I felt I didn't have to go again for a while. I would purposefully keep myself dehydrated so I did not have to experience symptoms. So, finally, I was applying for life insurance and I had to give a urine sample. A few days later they called to tell me that I had failed my urine test because my white blood cell count was very high. This was normal for me, every time I had gone to the doctor I would say I felt I maybe had a low-grade UTI and every time they tested the urine they would find white cells. Also my routine urine tests at the OB/GYN would always come up with a high white blood cell count. So, I stayed up drinking water and taking aspirin before the next test and I managed to pass it. But, I knew something was wrong. Then I developed strange joint inflammation, which would come and go, and I sort of ignored it. But, then, I developed a truncal petechial rash that itched horribly. So, I went to the doctor and a third year medical student from my medical school took my full history. She made sure to be very thorough and I told her about the joint inflammation in addition to the rash. She then asked about urinary symptoms, which I felt was unrelated, but I told her that I had suffered from recurrent UTIs and I felt that I could have a low-grade one again, so they took my urine and sure enough I had a high white blood cell count. So the doctor put my on antibiotics and also on prednisone for the rash. The rash cleared up, but once the prednisone was over with, it came back. The UTI symptoms didn't go away. So I went back to a nurse practitioner in the same practice and told her about the UTI symptoms and rash and she said my urine culture came back positive for a small amount of beta strep, which is a normal vaginal flora (probably not a UTI), but she put me on a 2nd, different antibiotic. She also gave me some shot for the rash which made it go away for good. The UTI symptoms didn't go away, and just got worse to the point where I was urinating blood and I was about to go on a medical mission trip out of the country and so I really wanted to get my health problems resolved. So, I went back to the first doctor I saw and he said that my problem screamed autoimmune to him, so he tested me for rheumatoid arthritis and lupus (which freaked me and my fellow medical students out) but luckily after a week of nervously waiting, they came back negative, and he also put me on a third antibiotic for the UTI symptoms, which now he thought could be some sort of resistant kidney infection. I went on my trip, on my third course of antibiotics, my stomach was a mess from this, and my urinary symptoms persisted. Oddly enough I was on a trip with multiple doctors and medical students, yet no one knew what was wrong with me. When I returned home, with no improvement, my doctor referred me to a urologist. He immediately thought I could have interstitial cystitis, but also considered that there could be a stone stuck somewhere. So we scheduled a bladder distention and a retrograde pyelorogram and a cystoscopy and sure enough when my bladder was distended he found hemorrhaging all along the bladder wall and made the diagnosis. I just went through 5 bladder instillations with Rimso and it has worked wonderfully for me. I am also figuring out what I can and can't eat/drink, because some things bother me and some things don't. I only received my diagnosis 4 months ago, so it's all pretty new, but I feel more normal that I ever have in my life now. It was amazing to read your story on here... I had so many other symptoms too and had really rearranged my life around this problem, sometimes without even knowing it, but I'd love to somehow get in touch with you to discuss further about living with IC. Glad you got your diagnosis too! |
Junior Member
Registered: 05-28-08
|
hello and I am 16 years old and doctors in Bismarck, North Dakota found my diagnosis about two years ago. I had been having troubles with my digestive system for about a year before they figured out what was wrong. I had made several trips to the ER and many doctors told me I was anorexic, stressed, or that I had Psychiatric problems. I was getting very frustrated until one more time I went to the Er with repeated symptoms of abdominal pain and vomiting. Dr. Langang was my hero. Instead of taking the easy was out, like most doctors did, he did a CT scan. They there found what was wrong. They diagnosed me with SMA Syndrome. Which is when the Superior Mesentaric Artery and Aerorta Artery are blocking off the Duodenom, which is a part of the intestines. My surgeon, Michael Schmidt, performed surgery to reroute my intestines. It was a success, but two weeks later i started to vomit and have severe abdominal pain again. I went to the ER once again and they did another CT scan and now said because of scar tissue, i had another blockage by my colon. I went in for surgery again. This was a success also and ended my episodes with SMA Syndrome, but now, 2 years later, I am having severe abdominal pain with elevated amylase and lipase levels about every two months. I will go to the hospital and get put on IV fludids and in two or three days it will be all back to normal, but doctors still cant find what is causing this. I am on my way to Mayo Clinic in Rodchester, Minnesota in July of '08 to see if they can find out what is wrong with me again. Doctors in Bismarck had originally thought it was my gal bladder. They took that out and it didnt solve the problem. Now they have no clue. I hope other doctors can tell me whats wrong this time.
|
Junior Member
Registered: 05-28-08
|
quote: Originally posted by kaysauerwein:
I myself do not have a mysterious illness it is my sister. She is diagnosed to have acute pancreatities but they aren't sure, and she has had this for many years and is in and out of the hospital with bad bouts of vomitting and its very disheartening to watch and see that the doctors can not find out what it is. She had gastric bypass surgery many years ago and it took years for her to develop these symptoms and she is getting worse as time goes by. The doctors want to do all kinds of surgery but they don't know if it will work and she is on her own machine at home so she don't have to keep going to the hospital for fluids. She was adopted and is not able to find out what her medical history is.
I couldnt help but to say something to this. I am 16 years old and i have had an intestinal bipass two years ago and have been sick ever since, They beleive they fixed the first thing but ever since that i have had elevated amylase and lipase levels which usually indicates pancriatis ( i hope i spelled that right) but anyways, they say its not normal for a kid to have this and its weird, because i would go in for blood work and my levels would only be high every two months. I would go to have blood done in July and they would be bad. I would have IV fluids for 3 days be better. come back in August for blood work and it would be fine. In September it repeated all over again. I am going to Mayo Clinic in July and hopefully they can find whats wrong. I will post when i get back. I wish you good luck Kaysauerwein. |
Junior Member
Registered: 06-08-08
|
Diagnosis-Dieulafoy's lesion In Feb 2004 while on active duty in the Navy and stationed in the mid east, I went to hospital bleeding to death. People thought I was drunk because I kept blacking out. I went to the Major Hospital in the area and every doctor was confused but did find 3 lesions in my intestine, and I was literally bleeding to death. After a piece of my intestine taken out, 22 units of blood and more then enough doctors trying to figure out what it was, I went home to Washington State for convelesant leave and then a naval doctor in bremerton looked it up and found out it was Dieulafoy's Lesion. At the time in 2004, I was 18, this diagnosis was very rare for someone at that age due to it happening more commonly in older men. It took up until I went home for 45 days to find out what happened, which was almost a month and a half later. (It's not long but it was a gruelling wait) I reside in Washington State and I do not know the location of my diagnosing doctor anymore due to her transferring duty stations. I'm thankful that It happened actually because I watch what I eat, drink and do and I'm actually healthier now and I thank all the doctors who performed the emergency surgery and I'm alive today. The only downfall is the 18 inch scar on my stomach. Dieulafoy's lesion |
Junior Member
Registered: 06-09-08
|
I think you should cast me because people need to be aware that this can happen to them. My case is pretty interesting.
In March 2008, I my mother was on immunosuppresents when she got a salivary gland infection. He face swelled up really big on one side. At the time I didn't think anything of it. About two weeks later I started feeling really tired and I had severe ear pain. I went to my pedinutrition (I'm 17) and she said that I might have an ear infection and she put me on a two week course of antibiotics. I went back to school and I kept going to play practice, but I just felt so tired. Once morning maybe a week after I got on the antibiotics I woke up and my eyes were extremely swollen. It was now mid April. She said that I might be having an allergic reaction to something. She questioned me about my environment. Did we have any work done on our house? How old was the carpet in my room? I told her that our sewer had just been worked on. Since she believed I was having a hypersensitive allergic reaction, she perscribed Allegra D, Advair, Veramyst. Two days later, I still had ear pain, I was exhausted, and when I woke up to get ready for school my face was so swollen it was unrecognisable. My dad thought that maybe I had mono. I went back to my doctor and she decided that she must be missing something. She sent me for a CT scan of my siniuses to see if there was a source of my ear pain she wasn't seeing. Then, she sent me for a full blood workup and allegy test. My blood work and CT scan came back comepletely normal. My allegy test said that I was only allegic to white oak and sycamore on at 3 out of 10 scale.
At this point I was feeling so bad I had to drop out of the school play. I was frustrated and upset because I didn't have any answers. My dad made an appointment for me to see an ENT. I went to his office and told him what medications I was on and explained my symptoms: ear pain, fatigue, swelling of eyes and face. He gave me a look and I saw the lightbulb go off in his head. He took a wooden stick and pushed it against the side of my mouth. He looked at me and said, "Your salivary glands have comepletely shut down. You have mumps."
I had been vaccinated for mumps as a kid. How could I have it? The ENT explained that in some individuals the vaccine doesn't take. The ear was caused by the pressure my swollen glands were putting on the nerves that connected to my ears.
My other doctor misdiagnosed me because she ruled out mumps do to my vaccination as a child. He misdiagnosis inadvertantly helped me. When my salivary glands shut down I became prone to infection, but because I was on antibiotics for an "ear infection" I didn't get sick. My mother's infected salivary gland was in fact a mumps outbreak. She gave it to me, and unfortunatly I gave it to my dad.
My dad went and got a mumps test when he got sick. My strain of mumps had five out of the eight classic mumps markers, plus some extra pieces doctors had never seen before. The virus had mutated.
It's June now, and the virus still isn't completely gone. Everytime I get really tired, my face swells up again. My dad has the same problem. Since there were only 600 of mumps in the US last year, I'm lucky that anyone diagnosed me at all. If you know something is wrong with you, you can't give up. Sometimes it's simply a matter of finding the right doctor.
|
Junior Member
Registered: 06-15-08
|
My husband was told in Dec, 06 that he has ALS and told that there wasen't any reason to get a second opinion.
After several rounds of fevers of 105 and the fact that he is ALWAYS in extreme pain and the fact that ALS does not have fevers or the pain,we got a 2nd opinion.
This new doctor found in my husband's blood the mycotoxin trichothecene. They both present the same way and you WOULD have the pain and fevers with this, as one doctor put it, "toxic injury"
The only way to remove the toxin is with a procdure called plasmapheresis.
After the first treatement he REGAINED use of his legs, after the third he was able to stand up and take afew halting steps. At the fifth he was able to walk a little more and his pain decreased.
Here is where it all went crazy.
The doctor who said he has ALS will not back down. He refuses to believe what he saw with his own eyes and he did his best to try to convince us that this kind of thingshappens all the time with people with ALS.
My husband can't walk anymore, couldn't walk before the
plasmapheresis, but was ABLE to walk during the treatments.
No one goes from having destroyed nerves to walking for no apperent reason. But that IS what would have happened if the toxin was what was causing the symptoms.
As another doctor put it, "he has a neuropathy that was previously clinically responsive to plasmapheresis."
ALS does not respond to anything. But the toxin does.
|
Junior Member
Registered: 06-17-08
|
kaysauerwein
Please, I have a simalair situation and have been looking for others like me. I have Chronic pancreatitis and have been suffering since I was 17. I am 21 today and yet there is no cure, clue or anything to what is going on with me. I have had my appendix and gallbladder both removed. I have also under went a pain pump installation surgery. Whatever details you might provide may help!!!! Please if you can contact me!!!
|
Junior Member
Registered: 01-29-08
|
quote: Originally posted by stratisf: quote: Originally posted by earache99:
I myself have a mystery diagnosis that was solved about four years ago. I have had bladder problems for the majority of my life and have seen three different urologists but they did not have any answers and all of the tests have came back normal. By the time I was in Junior high school I thought that I had outgrown my bladder problems but they gradually started to reappear. I have always had burning sensations on the inside of the bladder when I would lay down or sit for long periods of time. By the time that I had completed my first year of college all of my old urinary symptoms had come back worse than ever, burning sensation inside the bladder, incontinence, bedwetting, and so on. Finally I decided to see a Gyencologist to see if they had any answers as to why this was happening. When I mentioned the symptoms to my the genecologist she examined me completely down under and immediately recognized what was causing me nearly 20 years of agony. She diagnosed me with Interstitial Cystitis, a bladder disorder that affects the lining of the bladder. I am now on Elmiron the medicine for Intersitial Cystitis and a diet for the disorder even though I still have occassional flare ups. Since I have been on Elmiron I have not peed the bed, my incontinence is almost completely vanished, and
Mystery diagnosis is one of my favorite shows and just recently my own diagnosis of interstitial cystitis was made. This is the first time I have come on the message boards and your post was the second post I saw, which I found so oddly coincidental. Anyway, I estimate that I have suffered symptoms of IC since my first year in college, when I remember painfully urinating out blood for weeks. It is possible that I had symptoms before, but I don't remember. I had been misdiagnosed with urinary tract infections to the point where I was on antibiotics about every 3 weeks to 2 months for a year and a half. Every doctor would ask about hygiene and my sexual practices and because I was a college-age sexually active female, they just kept assuming that I had a UTI. I would urinate lots of blood and sometime pass blood clots in my urine. I was in SO much pain and the story goes on and on, but eventually after college the most significant symptoms had subsided, but I would still have to get up multiple times in the night to go to the bathroom. I was convinced that I suffered recurrent UTIs, so I would make sure to always urinate after sex, upon waking up every morning, and to keep myself very clean. I also noticed that I would have to go the bathroom multiple times in a row right after drinking orange juice or tea. I would joke that it was like walking a dog, and that once I had to go, I'd have to go about 3 - 5 times in a row before I felt I didn't have to go again for a while. I would purposefully keep myself dehydrated so I did not have to experience symptoms. So, finally, I was applying for life insurance and I had to give a urine sample. A few days later they called to tell me that I had failed my urine test because my white blood cell count was very high. This was normal for me, every time I had gone to the doctor I would say I felt I maybe had a low-grade UTI and every time they tested the urine they would find white cells. Also my routine urine tests at the OB/GYN would always come up with a high white blood cell count. So, I stayed up drinking water and taking aspirin before the next test and I managed to pass it. But, I knew something was wrong. Then I developed strange joint inflammation, which would come and go, and I sort of ignored it. But, then, I developed a truncal petechial rash that itched horribly. So, I went to the doctor and a third year medical student from my medical school took my full history. She made sure to be very thorough and I told her about the joint inflammation in addition to the rash. She then asked about urinary symptoms, which I felt was unrelated, but I told her that I had suffered from recurrent UTIs and I felt that I could have a low-grade one again, so they took my urine and sure enough I had a high white blood cell count. So the doctor put my on antibiotics and also on prednisone for the rash. The rash cleared up, but once the prednisone was over with, it came back. The UTI symptoms didn't go away. So I went back to a nurse practitioner in the same practice and told her about the UTI symptoms and rash and she said my urine culture came back positive for a small amount of beta strep, which is a normal vaginal flora (probably not a UTI), but she put me on a 2nd, different antibiotic. She also gave me some shot for the rash which made it go away for good. The UTI symptoms didn't go away, and just got worse to the point where I was urinating blood and I was about to go on a medical mission trip out of the country and so I really wanted to get my health problems resolved. So, I went back to the first doctor I saw and he said that my problem screamed autoimmune to him, so he tested me for rheumatoid arthritis and lupus (which freaked me and my fellow medical students out) but luckily after a week of nervously waiting, they came back negative, and he also put me on a third antibiotic for the UTI symptoms, which now he thought could be some sort of resistant kidney infection. I went on my trip, on my third course of antibiotics, my stomach was a mess from this, and my urinary symptoms persisted. Oddly enough I was on a trip with multiple doctors and medical students, yet no one knew what was wrong with me. When I returned home, with no improvement, my doctor referred me to a urologist. He immediately thought I could have interstitial cystitis, but also considered that there could be a stone stuck somewhere. So we scheduled a bladder distention and a retrograde pyelorogram and a cystoscopy and sure enough when my bladder was distended he found hemorrhaging all along the bladder wall and made the diagnosis. I just went through 5 bladder instillations with Rimso and it has worked wonderfully for me. I am also figuring out what I can and can't eat/drink, because some things bother me and some things don't. I only received my diagnosis 4 months ago, so it's all pretty new, but I feel more normal that I ever have in my life now. It was amazing to read your story on here... I had so many other symptoms too and had really rearranged my life around this problem, sometimes without even knowing it, but I'd love to somehow get in touch with you to discuss further about living with IC. Glad you got your diagnosis too!
Well at least it seems to me that no none thought you were crazy or being a hypochondriac and every urologist thought this of me. I also have Asperger's Syndrome, a brain disorder and even with this I knew that these doctors were missing something. I have had bladder problems since I was about two years old and the pain and burning were so intense that it maid potty training more difficult for me. I was later diagnosed with Asperger's Syndrome, a brain disorder that falls under the category of Autism and even with that disorder I always felt that there was something that the urologists were missing. My mother is a nurse and therefore not the type of person that will just rush her daughter to the doctor for every illness. Although she had her own set of doubts and frustrations about my illness I could sense at times that her nursing instincts felt that there was something else wrong with me besides a brain disorder. Sometimes I felt as smart as she was about my problems sometimes I even felt that she was so frustrated with my constant crying over this that even she just learned to ignore it whether that was true or not. When I finally mustered up the courage to go to Dr. Laudenbach at age twenty two years of age I was finally relieved to find an answer and that I was not a hypochondriac. Once again I would like to deliver this message to parents,teachers, doctors and patients themselves. Parents and or patients themselves should not be afraid to seek a second opinion if needed and keep searching if you have any health concerns. Parents and children should inform teachers of a child's medical condition even if certain accomodations need to be made that are normally against school rules. Message to doctors please listen and examine each patient completely when they have concerns and if it is something you do not understand please send them to another doctor who does. Thank you and I hope to one day deliver this message live on Mystery diagnosis. Thank you! |
Junior Member
Registered: 01-29-08
|
Mystery dianosis is one of my favorite shows and I would greatly appreciate being able to discuss my problems live as I feel I have finally found the answer to my contant bladder agony that I have had since I was a baby. My gyencologist seems like she knows more about this than a urologist does. This show and my personal diagnosis of interstitial cystitis have taught me that doctors are just like anyone else and that it does not hurt to seek help until you find an answer. Sure I have felt stupid doing it, while at the same time I feel that if I would have been shy or embarrassed about visiting Dr. Laudenbach I would have never found an answer. I still have flareups and have to go to the doctor. I have noticed that many other things can cause my flareups such as other female infections whether they are in vagina or urinary tract can cause flareups, certain foods,stress, and just forgetting my Elmirion medicine.
|
Junior Member
Registered: 01-29-08
|
[QUOTE]Originally posted by mysdiagnosiscasting:
Discovery Health Channel is searching for people to tell their stories on the 6th season of MYSTERY DIAGNOSIS. Each episode tells the stories of people who suffered with ailments that, because of their rarity, complexity or similarity to other illnesses, went undiagnosed for months or years before a physician could unravel the clues and nail down an accurate diagnosis.
Please send an email to MysteryDiagnosisCasting@gmail.com and indicate what your illness is, what state you reside in and the location of your diagnosing doctor, and tell us how your life is different now that you have been diagnosed.
(Please note that the producers are notQUOTE]
I really think that I would be a great canidate for the show based on my own personal history of twenty years of agony. I will email you guys a second page as an attachement to what I have emailed and please let me know when you do receive it via email and telephone.
|
Junior Member
Registered: 06-23-08
|
I ENJOY WATCHING MYSTERY DIAGNOSIS AND ALL YOUR HEALTH RELATED SHOWS. TONIGHT'S SHOW "THE WOMAN WITH A KNIFE THOUGH HER HEAD" MADE ME REALIZE HOW LUCKY I WAS TO BE DIAGNOSED EARLY ON WITH HOSHIMOTO DESEASE, BUT EVEN SO, MY ORDEAL IS NOT OVER...PRIOR TO MY ONE AND ONLY PREGNANCY IN 1991, I WAS IN PERFECT HEALTH. BUT MY PREGNANCY WAS COMPROMISED BY FIBROIDS INFESTING MY UTERUS AND I ENDURED 7 MONTHS OF PAIN. EVEN SO, I WAS RELEIVED THAT THE FIBROIDS DID NOT COMPROMISED MY DAUGHTER'S HEALTH...BUT AFTER GIVING BIRTH, I COULD NOT SLEEP, I WAS GIVEN A SEDATIVE TO MAKE ME SLEEP. ONCE HOME I SITLL CONTINUED UNABLE TO SLEEP, I WAS FULL OF NON STOP ENERGY...BUT SUDDENLY ONE DAY MY WORLD BECAME THE OPPOSITE, I COULD BARELY LIFT MY BODY OUT OF BED, I WOULD SLEEP ENDLESSLY AND I THOUGHT IT WAS ALL DO TO BEING A NEW MOM. MY WEIGHT INCREASED, I WAS HEAVIER AFTER GIVING BIRTH THAN WHEN I WAS PREGNANT AND EVERY SYMPTOM THAT CAME ABOUT, AGAIN, I CHALKED IT UP TO MY NEW ROLE...IT WASN'T UNTIL A YEAR LATER THAT I VISITED MY OBGYN, HE INFORMED ME THAT I HAD A GOITER, WHICH I HAD NOT IDEA WHAT IT WAS, HE PROCEED TO EXPLAIN THAT MY THYROID GLAND WAS ENLARGED AND HE REFERRED ME TO AN ENDOCRINOLOGIST, DR. SMITH, WHO IN LESS THAN A MONTH DIAGNOSED ME WITH HOSHIMOTO DESEASE. DR. SMITH PERSCRIBED ME LEVOXL MEDICATION TO REDUCE THE GLAND AND STABOLIZE MY TSH LEVELS, BUT SIX MONTHS INTO THE TREATMENT THERE WERE NO CHANGES, HE THEN SUGGESTED BIOPSY TO TEST FOR CANCER, THANKFULLY THE RESULTS WERE NEGATIVE. I CONTINUED UNDER DR. SMITH'S CARE BU UNFORTUNETLY HE MOVED AWAY...MY MEDICAL DOCTOR AT THE TIME TOLD ME HE COULD CONTINUE MY TREATMENT...THEN ON A FAITHFUL DENTAL VISIT, AFTER MY DENTIST ADMINISTERING LOCAL ANETHETIC FOR MANDIBULAR BLOCK, MY HEART BEGAN TO RACE, BECAME LIGHT HEAD AND DIZZY, HE ASSURED ME THAT I WOULD BE OK, FOR THIS SOMETIMES HAPPENS TO PEOPLE WITH THYROID PROBLEMS. NEEDLESS TO SAY I WENT HOME AND THE SYMPTOMS BECAME WORSE, I WAS BLOCKING OUT, TOTAL BODY WEAKNESS OVERPOWERED ME, I FELT THAT I COULD NOT WAKE UP, EVEN LAYING I BED I FELT AS THOUGH I WAS ON BOAT ROCKING BACK AND FORTH....THESE AND MORE SYMPTOMS CONTINUE FOR MONTHS, TEST AFTER TEST...ALL RESULTS NEGATIVE, THEN ONE DAY I SAW MY MEDICAL DOCTOR OUT OF THE OFFICE HE ASKED HOW I WAS DOING AND TOLD HIM, NO CHANGE IN MY CONDITION, HE PROCEEDED TO TELL ME THAT I NEEDED GOOD SEX AND I TOLD HIM I NEEDED A NEW DOCTOR...MY NEW DOCTOR TOOK ME SERIOUSLY AND PERFORM NUMEROUS TEST, REFEERED ME TO SPECIALIST BUT EVERYTHING CAME BACK NORMAL....I TOOK MY SELF OFF THE THYROID MEDICATION AND FELT BETTER, BUT MY DOCTOR CONTINUE TO TEST MY TSH LEVELS WHICH CAME BACK NORMAL. TODAY MY NEW DEVELOPMENT ASIDE FROM HOSHIMOTO IS A NODULAR THYROID GLAND WHICH HAS CAUSED ENLARGEMENT OF THE GLAND AGAIN AND MY NEW ENDOCRONOLOGIST, DR KAUFFMAN, HAS PUT ME BACK ON MEDICATION TO REDUCE MY GLAND TO AVOID SURGERY.
WHAT I HAVE WRITEN IS NEARLY NOTHING TO WHAT I HAVE LIVED WITH IN THE PAST 15 YEARS, THERE HAVE BEEN MANY MORE SYMPTOMS, FOR EXAMPLE; MEMORY LOSS, THERE ARE DAYS I DONT REMEMBER THINGS THAT OCCURRED THE DAY BEFORE OR THINGS I SAY A MINUTE AGO...ALTHOUGH ONE IS DIAGNOSED, ONE IS NOT ALWAYS OUT OF THE WOODS...I LIVE ON A ROLLER COASTER OF UPS AND DOWNS PHYSICALLY AND EMOTIONALLY.
THANK YOU FOR YOUR TIME.
|
Junior Member
Registered: 06-26-08
|
A surprise of a lifetime happened to me on Febuary 27, 2007; I got out of the shower that morning and noticed my right eye was blurry and dilated more so than my left, not thinking too much into it I had my mother take me to work just incase and made a doctors appointment for 10 am. I would have really bad headaches every so often; i called them lighting headaches because that's what it felt like electrial pain shooting throught out my head and body but i didn't look to hard into it just thought i had migraines. Any who, My mom came and picked me up for my appointment and when she saw me her mouth dropped open; apparently my right I lid was drupping but the eye was pointing to the upper right corner of my eye. I was taken to the ER where they discovered nothing and sent me to an eye doctor which told me that there was nothing wrong with my vision; worst case sincero i had an anerysum, mind you that i'm only 23 at the time and not thinking that would be on a list of aliments. Luckily, i was blessed to get to my first Neourologist and he had several tests ran on me before we even met. Some of those included MRI'S of my entire brain and CNS; the results weren't good. I had severe inflammation and leisions within those areas and fluid around my brain. Turns out that the inflammation was putting pressure on my third cranial nerve which mad my right eye go wacko. He ordered a spinal tap for that evening and again not good results, my inflammation was so high that it was off the charts, unreadable. Next thing you know I have a infectious disease doctor, oncologist, and my neurologist all around the hospital bed telling me that they are checking for lymphoma and that i would get results in the next few days but that i had to stay in the hospital and all i could think was I can't do that i have a 6 month old to take care of. After 4 days of testing and everything coming back normal, Dr. Dove (my neurologist) said that he had to send me to Barnes Jewish in STL to the head of their Neurology depeartment because he can't figure out and that it's rare and serious enough to go that route. So off to STL this is now March 4th 2007; by that time my eye was getting better but i was having constitant pain in the right side of my head; I was on all sorts of pain killers and had to put hot packs on my head, anything to make it go away. I was there for a month getting every test/biopsy you can imagine. Everything was coming back normal except for my scans, they had to make sure that it wasn't brain lyphoma so as a group of doctors and one scared patient we decided to truly get a diagnosis a double brain biopsy of the leisions was necessary, at that point i was willing to do anything to stay alive for my son. On March 23 2007 I had the surgery which confirmed that it wasn't brain lymphoma, so what do you have you may be wondering; well it's called
NEUROSARCOIDOSIS
An extremely rare autoimmune disease that hasn't had a lot of research done on it
5-10% of the population get have it i think
and only 1% of that only have it neurologically
(that's me)
Since the diagnosis i have had several spinal taps, high dosages of Predinose (horrible healer drug) and other medications to try to wean me off of the prednisone. My Neurologist in STL also a great man calls me his prednisone poster child because i have been on 100mg for a month now. It's already starting to have bad affects but i have high hopes that we will find the right medication for this. Thanks for reading. There is always so much to tell with stories like these but you have to stop at some point. Hope you all are having a good day.
|
Junior Member
Registered: 06-27-08
|
My son in law was diagnosed with gastroperisis 9 years ago. Just recently he was told that in fact he does not have that disease but they cannot figure out what is wrong with him. He and my daughter have been to doctor after doctor and still have yet to figure out what is wrong with him. Maybe a bout on your show would turn up a doctor that could help them. He is only 24 years old and has a brand new baby and wife. Please consider them. The details of the last 9 years would certainly bring something to your show. They are denied ambulance rides here in our town because he has to go to the hospital so much and it is 60 miles away. We live in Ione Washington. There has never been a tv show of any kind here either. Contact me at vtaber1021@gmail.com
|
Junior Member
Registered: 07-01-08
|
I'm still in the hospital being treated for my mystery diagnosis. I first became symptomatic during my Fall semester of my senior year of college. To summerize I had painful sciatic pain and every health professoinal i saw told me that it would be tempoary and perhaps due to a slipped disc. It wasn't until two days before I was ging to fly back to school after Christmas Break that during a foot consult I was eventually refered to get the diagnostic MRI that found a large tumor in my lower back.
After a biopsyan inital diagnosis was made of chondrosarcoma, however a family friend offer to have his former supervisior and well known pathologist look at the sample. The diagnosis was then changed to chondroblastic osetosarcoma. With the new diagnosis meant that i began a chemo regime. THe plan was to schedule surgery after the first cycle but as i was being evaluated with some last minute tests masses were found in my spleen. Some of my phsyicans were convinced that my cancer had metastitized and that the planned surgery would be useless. I insisted that I have a spleenectomy so that there would be less chance of seeding the cancer. Afterthe procedure and subequent negative pathology report, the original surgery was rescheduled. I was under the assumption that I would have this surgery with many deficits but I would still retain both legs and ambulation was still a possibility. However it was determined by both my physican and other orthopedic surgeons around the world that my left leg would be unsalvagable during the tumor removal.
So this is day 61 for me after my hemipelvectomy, or left hip and leg amputation. I am still in the hospital waiting to heal enough to go home. Its been a really long lifechanging experience that began with a popular complaint of sciatic pain.
|
Junior Member
Registered: 07-04-08
|
My 25 yr old son was diagnosed in Nov 07 after 4 years of suffering and in and out of dr's and hospitals with Adrenomyeloneuropathy. He threw up every morning for 4 yrs dropped 50 lbs and would become extremely dihydrated. He was very fatigued all the time and had problems breathing sometimes. He also has bladder problems and Bowel problems.
Then the summer of 07 we noticed walking problems he started falling and then walking like he couldnt bend his legs, FINALLY the dr realized this was a neurological problem and referred him to the neurologist.
This is a genetic progressive disease and my son will most likely end up unable to walk. His Adreal Glands do not work (thats why the throwing up and weight loss). It was not what we wanted to hear but at lease we knew. He is now on a few medications and he has put some weight on and he is not throwing up every day. His walking is getting worse but we are so grateful to know how to deal with this now. Dont ever give up on getting answers.
|
Junior Member
Registered: 07-06-08
|
I have a client that I met last year at the school my children were attending. In passing a woman in a soft neck brace was talking to the Secretary at the front desk , she said looks what happens when I take off my brace. I was not prepared for what I seen her entire body went into a seizure like spasm ,facial muscles were pulled down and she had enough control to reapply the brace where then sat for a time for the spams to stop.She has a tendancy to drag her right leg in severe bouts and attacks, it impaires her walking and her movements need to be very slow and deliberate for her to get from one point to another.
Upon getting to know her better I found out she had begun her mystery when she was working with a personal trainer, she felt some damage to her neck and has been this way since.
The symptoms start with pressure behind the right eye and continue into the spasms afterwords she dry heaves,however she has never thrown anything up. They can be triggered by touch due to the hyper sensativity it took us a long time to get threw some muscle work I have done for her , the muscle work got her out of the neck brace. She did a series of Hyperbarrac chamber treatments ,20x's I believe, to see if it would help repair some of the seemingly nerve damaged tissues that she may have. She has seen neurologists and Dr's and has had MRI's. Sometimes very cold weather will trigger her symptoms, I have found that she really can not feel cold weather. Then sometimes the symptoms just happen. Even with the series of Dr.'s she has seen she has not been able to fit into any specific diagnosis. Financial exhausted in her search she has told me several times she is ready to "give up."
I have not had a client I have been unable to help or find help for in some way , it is with a pleading desperation that I ask you please consider and reply , Thank you for your time. Please feel free to contact me thew E-mail at bodyworker9989301@yahoo.com
|
Junior Member
Registered: 07-13-08
|
inswoman3...my father has been going through the same symptoms for the last year or so and doctors are failing to give a diagnosis...have you any new developents??? quote: Originally posted by inswoman3:
I have been suffering for about a year without a firm diagnosis. My doctors have tested for many diseases and come up with dead ends. I went to the Mayo Clinic in Arizona in January and their best guess is extraintestinal manifestations of ulcerative colitis (very rare and not sure that is what it is) Icolitis has not flared up in many months. Symptoms include, platelets that have increased over the past 5 years from the high 400,000's to over 1.4 million, respiratory distress, inflammation and narrowing of the trachea, runny nose, excessive mucus, chronic cough, irritation of the eyes, rashes on both hands. Last May it began with unbearable headaches and swelling in my face. Those symptoms are gone. Mayo put me on high doses of prednisone which is not a good place to be. I still have mucous and eye irritation and some coughing though,my last labs showing the platelets down to 775,000 from over 1,000,000 3 weeks prior. I need SOMEONE to help me figure out what this is. I am only 22 and previous to all this have been very healthy.
|
Junior Member
Registered: 07-14-08
|
quote: Originally posted by hscev001:
I have lived with what I believe is "dysfunction of the belch reflex" since I was about 12 (I am 21 now).
I have found many other people like myself via the internet and other message boards, and all of us remain undiagnosed by our gastroenterologists (who only laugh when we say we can't burp).
My name is Julie and I'm from NJ. I HAVE been professionally diagnosed with Dysfunction of the Belch Reflex by a doctor in Chicago, IL. I sent an e-mail to Mystery Diagnosis, as I am the first and only person professionally diagnosed with this condition at this current time. I am pretty much the poster child for this condition and everyone who has it or knows about it knows me. I've received countless e-mails with questions about the condition and where to find support. There are very few of us, but I believe that if I get on the show, more will come forward and realize that they are not alone. I am in the process of finding ways to get information about this condition to doctors everywhere since the only ones who know what it is are the ones researching it. Thank you all for reading. -Julie aka gurgles  |
Junior Member
Registered: 07-20-08
|
After a surgery (2004) for a deviated septum and sinus infections, my husband was treated for depression. For almost 1 1/2 years he kept getting worse. Some of the symptoms included fatigue, cognitive problems, sleeping a lot, poor personal skills and poor short term memory. They kept saying it was the stress of a new promotion. Finally in January 2007, at my insistance I got him into my intenal medicine group. He was finally diagnosed with a Prostate infection. We feel that he had the infection for at least 2 1/2 years. But that was just the beginning. The antibiotic regimen and the prescibed rest still didn't resolve all the symptoms. As a result of the anesthesia from his first surgery, it "activated" the long term effects of bacterial meningitis that he had when he was in the 2nd grade! He still has some cognitive problems as a result. They are not obvious unless you know him. But it still didn't explain the whole complex of his problems. The psychiatrist prescribed Abilfy which did not work but created Tardive Dyskenisis as a permanent side effect.
After a comment from a social worker that we were working with, I started doing research on the internet. I found the criteria for diagnosing adult Asperger's. My husband fit the diagnosis. After presenting the research to the psychiatrist, he confirmed the diagnosis of Asperger's. Now you must understand that my husband is 59 years old! We had always noticed he had "problems' but we had tried to train him to compensate for his lack of personal skills. We just didn't realize what the problem was.
Because of his health issues he decided to take the early retirement offer that his place of employment offered that year only. He retired after 22 years December 29, 2007.
|
Junior Member
Registered: 07-20-08
|
I started getting sick when I was 7 years old. Doctor's were completely stumped on what I could have. They performed hundreds of tests on me, and everything came back normal. My symptoms were severe nausea, uncontrollable vomiting as often as every 2 minutes, and inability to keep and food, drink, even my own saliva down. The longer I spent throwing up, the weaker I got. I was severely dehydrated and was admitted to the children's ward of St Joseph's Hospital in Houston, TX. After doing this for 7 more years, in the hospital every 3 weeks, still with no answers, we had one of the many doctors we had seen so far diagnose me with a "label," not even an actual illness at the time. Cyclic Vomiting Syndrome, and unknown illness had been controlling my life and there was, and still is, no cure. I am now 20 years old, I take Amitryptaline (Elavil) daily to prevent the next episode. There are 4 phases of an episode. During Phase one the patient will wake up, usually early in the morning, and have severe nausea, some wake up and just start vomiting, but for those who don't there was meds that can be taken to try and abort an episode, but when they don't and the vomiting starts, it leads into phase 2. Phase 2 consists of severe nausea and vomiting, weakness, and joint and back pain. Some even go into what some doctor's call a conscious coma. The person will lay there, eyes closed, without moving, and shallow breathing. Some can still eat and drink while they are sick, but for those who can't, IV fluids may be needed to abort the episode. After the nausea and vomiting stops, Phase 3 begins. Phase 3 is the recovery phase. Some people are able to start eating normal foods right away, but others have to start off with the liquid diet, and slowly get back to normal. Phase four is the normal period in between episodes. There are no lasting signs and the patient will seem perfectly healthy until the next episode strikes. Episodes can be triggered by stress, previous illness (like the cold or flu), lack of sleep, eating too much, or not enough. It has lost people their jobs, complicated children's normal lives, and made vacations a thing of the past. It is extremely hard to find doctor's who have heard of this illness, and many of them still believe that it is psychological. I speak for all of the CVS sufferers when I say we want the word out about this illness, so that we can get a better solution thank having to take medication for the rest of our lives. Please look into our stories, go on cvsaonline.org and talk to some of us about what we go through. We want more doctor's to know about our condition so that we can get the help we really want.
|
Junior Member
Registered: 07-25-08
|
HELLO,
I JUST JOINED THE FORUM BECAUSE AS RECENT AS YESTERDAY I HAD AN EPISODE OF A RARE ALLERGY THAT I'VE BEEN HAVING SINCE I HAD LIKE 12 YEARS OF AGE, AND NOBODY SEEMS TO BE ABLE TO COME UP WITH A DIAGNOSIS. THE CLOSEST I'VE FOUND ON THE INTERNET IS "HEAT ANAPHYLAXIS"; AND THAT IS A CONDITION THAT AFFECTS MOSTLY ATHLETES, WHICH IS A CATEGORY I DON'T FIT PRECISELY DUE TO THIS ALLERGY. ALL I CAN SAY IS EVERY TIME I AM EXPOSED TO EXTREME HEAT OR MAKE ANY EXCERCISE, I START HAVING AN ALLERGIC REACTION THAT WEARS ME OUT: ITCHY, WATERY EYES AND NOSE, HIVES, MY HEART STARTS POUNDING VERY HARD, ALL MY BODY STARTS SWELLING UP FROM ALL THE HIVES GETTING MIXED WITH THE OTHER HIVES NEXT TO THEM, MY FACE SWELLS UP REALLY BAD, MY THROAT GETS SWOLLEN TO THE POINT THAT I CAN'T SPEAK, I CAN HARDLY BREATH AND START WHISTLING (LIKE ASTHMA, I HAVE TO TAKE RESPIRATORY THERAPY W/ALBUTEROL EVERY TIME THIS HAPPENS); I HAVE EVEN BLEED VAGINALLY WHEN I GET THIS ALLERGY, SEEMS LIKE MY INTERNAL ORGANS ALSO SWELL, AS WELL. IF I HAVE FOOD IN MY STOMACH, I WILL THROW UP.
THE GOOD SIDE IS I KNOW WHAT CAUSES IT, SO I JUST AVOID DOING EXCERCISE OR BEING IN THE HEAT; BUT THIS IS MORE THAN JUST THAT. IT KEEPS ME FROM LIVING A NORMAL LIFE, I CAN'T GO OUT AND PLAY WITH MY KIDS, CAN'T ENJOY A BEACH OR POOL FOR A LONG PERIOD OF TIME, ETC. LIKE OTHER PEOPLE IN THE FORUM, DOCTORS JUST DON'T SEEM TO TAKE IT SERIOUSLY; THEY APPARENTLY THINK I AM TRYING TO MAKE UP EXCUSES FOR NOT EXCERCISING. THIS HAS CAUSED ME TO BE VERY OVERWEIGHT (290). I AM 41 YRS NOW, AND MY METABOLISM SEEMS TO JUST HAVE STOPPED. I GOT TYPE 2 DIABETES AND IT'S NOT MUCH WHAT I CAN DO FOR EXCERCISE. THERE WERE 2 TIMES I HAD A C.B.C. DONE AND IT HAD COME OUT AS IF I HAD 8 CROSSES OF SIFILIS; WHEN I GO AND HAVE A SECOND TEST DONE, IT COMES OUT O.K. THIS HAVE MAKE ME THING THERE'S SOMETHIG WRONG WITH MY BLOOD, WHICH IS A+. I WENT TO A DR. WHO MADE ME A LUPUS TEST, WHICH CAME OUT NEGATIVE. MY UNCLE'S WIFE HAS LUPUS AND SHE TELLS ME SHE BELIEVES WHAT I HAVE IS A COLLAGEN CONDITION. I AM SO TIRED OF THIS AND AT SOME POINT SO FRIGHTENED MY SONS COULD GET THIS FROM ME, BUT THANKS GOD THEY ARE VERY NORMAL; ONLY MY YOUNGER SON IS BEING TREATED FOR WHAT THEY BELIEVE IS MIXED DEVELOPMENTAL DESORDER; BUT NONE OF THEM SEEMS TO BE AFFECTED BY EXPOSURE TO SUN OR HEAT OR EXCERCISE. THIS DEPRESSES ME VERY MUCH, I CANT EVEN CLEAN THE HOUSE WITHOUT HELP FROM SOMEBODY, I FEEL I AM A NUISANCE, CANT SEEM TO FIT IN ANYBODY'S PLANS AND RUIN EVERY TRIP WE GO DUE TO MY CONDITION. EVERYBODY GOES AND HAVE FUN AND I JUST CANT TO THIS, CANT DO THAT....IT'S REALLY DEPRESSING. PLEASE HELP ANYBODY! THANKS
|
Junior Member
Registered: 08-09-08
|
Hi my name is Jessica and I was diagnosed at age 25 with Chiari Malformation/Syringomyelia after 20 years with headaches,back pain,passing out, staring spells, dizziness, I would drop things all the time. My symtoms really got really bad about like 5 years ago, I would pass out like every other day, I would lose feelings in my leg, I would get extreme headaches, lightheaded, dizzyness, neck pain, I felt like I was always drunk, I was always extremely tired , I wasn't able to go up hills without extreme pain at first then after a month or two I wasn't able to walk more then a few feet with extreme pain in my back and legs. I would alway be in pain while at work. The symtoms started with passing out and then progress to all the rest. I have had so may more symtoms also. Before I was diagnosed with these Chiari malformation/Syringomyelia, I was diagnosed with Anxiety disorder,depression,The also try to tell my mom that they should be put in a psych unit cause I was making my self sick or that I was doing it to get attention, and ask if I had any problems at home, they even asked me if I took any illegal drugs. one doctor even when about and told me that they could sue me for faking it. this is a summary of my ordeal. I have so much more to say but that would tak to long.
I was born with the codition Chiari malformation
Jessica
DX: Chiari malformation
Syringomyelia
Carpal Tunnel Syndrome
Scoliosis
Hypothyroidism
|
Junior Member
Registered: 08-13-08
|
My father has been suffering from allergic reactions for the past 25 years. Allergy test were done 20 years ago and what they told him was the cause, was not the cause. His reactions are so bad that his blood pressure drops and he becomes unconscious. Before the swelling starts, he has diarrhea, once he has that bowel movement, its like a chain reaction, his body will swell on the inside and his tongue will become extremely large where his airway is blocked. Just on yesterday he had a bad reaction. He takes benadryl and prays it goes away so he doesn't have to take the epi-pen. I know the epi-pen would save his life, but it makes him feel like his heart is going to explode. That is the last resort for him and sometimes it seems to late. We have giving it to him, not by his choice. He went to a allergist doctor on July 30 2008 and this dr thinks it is mastoscytosis, after researching it, it really made sense. On Aug 6 he went to Oschner's in New Orleans, La for test. This doctor does not think that it is mastocytosis. The problem is, this doctor is the same doctor he seen 20 years ago at a different hospital. Nothing was diagnosed. What they told him was the problem was not the problem. Now he has really lost hope and now he thinks that this will be his death. After my father was lifeless just 8mths in my lap, so many 911 calls, i beg anyone that would have a clue on what can be the problem, please reply. This is a unsolved medical mystery that needs to be solved before a life is taking.
Thank You,
gtel
|
Junior Member
Registered: 08-16-08
|
I have a rare birth defect. I was born without the cribriform plate in my skull. I am 41 and have never had a problem with this birth defect until now.
Since April, I have had a drainage from my left nostil. I had seen several doctors who just been treating me for allergies. It took me five months to get a doctor to listen to me. Dr. Boggess,an ENT doctor, took a sample of the fluid for testing. The results is CSF (cerebrospinal fluid)leak. I do not have any of the symptoms of a CSF leak. No headaches, vomiting,ringing in ears, ect. Just the leak. He sent me to a nerosurgeon the same day he got the results.
Dr.Wood sent me for a thin slice CT scan on the same day. He told me that I have a birth defect. I am missing the cribriform plate in my head!! My brain had shifted a little causing the tear in the dura.
Now I am scheduled for surgery on Aug. 25th to repair the tear and to build the missing bone.
I have never heard of this birth defect. If anyone has ever had this defect please let me know.
Thanks for reading my post.
Deborah Lawrence
|
Junior Member
Registered: 08-19-08
|
I am a 31 y.o. caucasion female with several undiagnosed problems. Hx: When I was 12 years old I was diagnosed with severe depression/anxiety and given a slew of medications over the next few years. In 1991, I was diagnosed with Lyme Disease. I had several antibiotic courses that were assumed to have been successful. I have been diagnosed with E.B.V., and H. Pylori that was treated several times, most recently last fall.
Today, I am about two weeks into weight gain in my breasts and abdomen and dizziness(first thought is pregnancy, right? Unfortunately I am not.) I have gained approximately 15 pounds in the last two weeks and the dizziness began after a bike ride around the neighborhood. I have also been experiencing severe night sweats for the past year, extreme nausea and stomach pain, diarrhea. The nausea was explained away with several diagnoses, such as Celiac disease and gastroparesis. Tests have all come back normal. I have had every gastrointestinal exam there is with no diagnosis. I thought perhaps I was peri-menopausal. Recent bloodwork rules out hormonal imbalance and thyroid disease. Hives have also interrupted my daily life. My legs, arms and neck become a mass of hives that consequently bleed when scratched violently. I suffer from headaches and very achy joints. I have an IUD and I take prozac 20 mg qd. I use Benadryl for the hives. For the past two months I have doing physical therapy for neck and back injuries that occurred in March 2006. My diet has not changed.
If there is anyone reading this who may have had the same symptoms and can give me some hope that I am not mental, it would really make a gal's day. Thank you for your help.
|
Junior Member
Registered: 08-19-08
|
quote: Originally posted by aryam:
HELLO,
I JUST JOINED THE FORUM BECAUSE AS RECENT AS YESTERDAY I HAD AN EPISODE OF A RARE ALLERGY THAT I'VE BEEN HAVING SINCE I HAD LIKE 12 YEARS OF AGE, AND NOBODY SEEMS TO BE ABLE TO COME UP WITH A DIAGNOSIS. THE CLOSEST I'VE FOUND ON THE INTERNET IS "HEAT ANAPHYLAXIS"; AND THAT IS A CONDITION THAT AFFECTS MOSTLY ATHLETES, WHICH IS A CATEGORY I DON'T FIT PRECISELY DUE TO THIS ALLERGY. ALL I CAN SAY IS EVERY TIME I AM EXPOSED TO EXTREME HEAT OR MAKE ANY EXCERCISE, I START HAVING AN ALLERGIC REACTION THAT WEARS ME OUT: ITCHY, WATERY EYES AND NOSE, HIVES, MY HEART STARTS POUNDING VERY HARD, ALL MY BODY STARTS SWELLING UP FROM ALL THE HIVES GETTING MIXED WITH THE OTHER HIVES NEXT TO THEM, MY FACE SWELLS UP REALLY BAD, MY THROAT GETS SWOLLEN TO THE POINT THAT I CAN'T SPEAK, I CAN HARDLY BREATH AND START WHISTLING (LIKE ASTHMA, I HAVE TO TAKE RESPIRATORY THERAPY W/ALBUTEROL EVERY TIME THIS HAPPENS); I HAVE EVEN BLEED VAGINALLY WHEN I GET THIS ALLERGY, SEEMS LIKE MY INTERNAL ORGANS ALSO SWELL, AS WELL. IF I HAVE FOOD IN MY STOMACH, I WILL THROW UP.
THE GOOD SIDE IS I KNOW WHAT CAUSES IT, SO I JUST AVOID DOING EXCERCISE OR BEING IN THE HEAT; BUT THIS IS MORE THAN JUST THAT. IT KEEPS ME FROM LIVING A NORMAL LIFE, I CAN'T GO OUT AND PLAY WITH MY KIDS, CAN'T ENJOY A BEACH OR POOL FOR A LONG PERIOD OF TIME, ETC. LIKE OTHER PEOPLE IN THE FORUM, DOCTORS JUST DON'T SEEM TO TAKE IT SERIOUSLY; THEY APPARENTLY THINK I AM TRYING TO MAKE UP EXCUSES FOR NOT EXCERCISING. THIS HAS CAUSED ME TO BE VERY OVERWEIGHT (290). I AM 41 YRS NOW, AND MY METABOLISM SEEMS TO JUST HAVE STOPPED. I GOT TYPE 2 DIABETES AND IT'S NOT MUCH WHAT I CAN DO FOR EXCERCISE. THERE WERE 2 TIMES I HAD A C.B.C. DONE AND IT HAD COME OUT AS IF I HAD 8 CROSSES OF SIFILIS; WHEN I GO AND HAVE A SECOND TEST DONE, IT COMES OUT O.K. THIS HAVE MAKE ME THING THERE'S SOMETHIG WRONG WITH MY BLOOD, WHICH IS A+. I WENT TO A DR. WHO MADE ME A LUPUS TEST, WHICH CAME OUT NEGATIVE. MY UNCLE'S WIFE HAS LUPUS AND SHE TELLS ME SHE BELIEVES WHAT I HAVE IS A COLLAGEN CONDITION. I AM SO TIRED OF THIS AND AT SOME POINT SO FRIGHTENED MY SONS COULD GET THIS FROM ME, BUT THANKS GOD THEY ARE VERY NORMAL; ONLY MY YOUNGER SON IS BEING TREATED FOR WHAT THEY BELIEVE IS MIXED DEVELOPMENTAL DESORDER; BUT NONE OF THEM SEEMS TO BE AFFECTED BY EXPOSURE TO SUN OR HEAT OR EXCERCISE. THIS DEPRESSES ME VERY MUCH, I CANT EVEN CLEAN THE HOUSE WITHOUT HELP FROM SOMEBODY, I FEEL I AM A NUISANCE, CANT SEEM TO FIT IN ANYBODY'S PLANS AND RUIN EVERY TRIP WE GO DUE TO MY CONDITION. EVERYBODY GOES AND HAVE FUN AND I JUST CANT TO THIS, CANT DO THAT....IT'S REALLY DEPRESSING. PLEASE HELP ANYBODY! THANKS
|
Junior Member
Registered: 08-19-08
|
what you may have is mastocytosis. Your symptoms are similar to mine but my hives get so bad that the little blood vessels pop and i end up with permanent red spots all over my body. I was diagnosed last year. There are different subcategories of mastocytosis. you can find more information about this at tmsforacure.org
|
Junior Member
Registered: 08-22-08
|
A Misdiagnosis and a double diagnosis- my detailed account of a 3 year epic.
Endometriosis and Crohn’s Disease.
I’m turning 19 next month, and I have been battling an unknown illness for the past 3 years- at least, it was unknown until this past Monday, August 18th.
In high school, I was always active, participating in sports, school theatre productions, and marching band. I had some pelvic pain that began to rise every so often at the end of my freshmen year. When the pain came- it was crippling, I would double over in pain, and just need to sit down for a bit and then I was okay again. My mother, who is a nurse, took me to see a gynecologist, thinking that it was fibroids. My gynecologist had me have an ultrasound done and nothing showed up- I was told that it was just my body developing and not to worry. The last two months of freshman year passed, and then summer vacation passed. I joined marching band in my new school.
But only a few months into my sophomore year in high school, the pain worsened. I was brought back to my gynecologist and she did another ultrasound- this time finding very small things on my ovaries. She diagnosed me with ovarian cysts, put me on birth control, and that was that. The pain lessened, but never completely went away.
Sophomore year ended, summer passed, and my junior year began. In marching band, we were just about to begin the competition portion of the season. But a few nights before competing at our rival school, I was rushed to the Emergency Room at the local hospital with chronic pelvic pain. They decided from the pain I had that I had appendicitis and operated- but my appendix came out normal. I missed the competition and the rest of the season.
My senior year, I moved out of my parents’ house to MA, to gain residency for college and to live with my boyfriend. The pain worsened and I had a few trips to the emergency room, but they would send me home a few hours later without answers and a bill to pay. I began seeing a local gynecologist, with hopes for a more effective treatment for the “Ovarian Cysts” that were causing me so much pain. I missed a lot of school, so much that even though I gathered the work and did it at home- the school still would not give me credit for my classes. The doctor looked at the ultrasound that had been done years earlier, and mentioned that they seemed far too small to be ovarian cysts. In most visits, he seemed dismissive of the pain that I would tell him about, like he almost didn’t care. He suggested that the pain could be brought on by stress- which I told him could not be true. Though, I later saw in a chart that he had faxed over that contained his personal notes that he even thought it was all in my head- that I was fabricating pain. With a month left in my senior year, I dropped out of school because I could no longer attend due to the pain and severe nausea followed by vomiting. I was at my wits end and about to find a new doctor to see, when he offered performing a laparoscopy and exploring my pelvic area to find what could be causing it. He diagnosed me with Endometriosis, changed my birth control, and sent me on my way.
A couple months passed and the pain was not lessoning at all. I was visiting my parents for the summer and my father suggested I see a gynecologist there for a second opinion. This gynecologist, on the first visit, changed my birth control to a higher dosage and did another ultrasound- because the amount of pain I had been experiencing was not equivalent to the amount of endometrial growths I had. She found a mass on my right side, where the colon is, and said that my colon is pushing down on my ovaries causing the endometriosis to become irritated, and suggested that I see a gastroenterologist.
The gastroenterologist performed blood tests, and an endoscope that came back normal. I was afraid I was back at square one. During this time, I began having more intense pelvic pain, missing endless hours of work. I finally began noticing when the pain would arrive- after I had finished eating and did my own research online on what could be happening to me- I came up with colon cancer, celiac disease, and crohn’s disease. I had begun to have darkened stools that implied they had blood in them, and ribbon stools- I worried. I requested from my gastroenterologist that I have a colonoscopy, not wanting to tell him about the darkened stools, I used my mom’s past experience with polyps as an excuse- he didn’t want to perform a colonoscopy since everything else came back normal. So, befuddled, I saw my family doctor, told him all the symptoms I’ve had. He told me to have a colonoscopy and my mother agreed; she called my Gastro the next day and scheduled a colonoscopy for me for the end of the month. The next Tuesday, bright red blood began showing up in my stool- I called my gastro and they moved the colonoscopy to Thursday. My doctor told me he found ulcers in my colon and had a few ideas in mind what it could be, the choices were Irritable bowel syndrome and Crohn’s disease. I had more blood work done and he had taken biopsies.
A week later, Monday August 18th, the results were in- I have Crohn’s disease- what he believes is Crohn’s Colitis, my doctor is still doing tests to figure out what form of Crohn’s disease I have.
I wanted to cry when I got the diagnosis- not just because of what Crohn’s is and what it can lead to (liver failure and cancer, from what I’ve read and been told by my mother), but because I finally had an answer, and now I could tell people that it wasn’t in my head. I could never imagine that someone my age could have Crohn’s disease or Endometriosis, but I have both.
|
Junior Member
Registered: 08-24-08
|
I have a story I have wanted to be on this show since I was diagnosed 11 months ago. In September of 2007, I was diagnosed with Celiac disease. I had had it my whole 19 years of living, and my doctors told me it was IBS. I had diarrhea, chronic joint pain, 3 and a half years with no menstrual cycle, anxiety, bloating, weight loss (from about 205 to 135 in about 1 year). Everybody was telling me it was nothing. Finally, my mom got tired of buying immodium AD, and told me to get my butt to the doctor, and find a different one in the same clinic. I told her all of my symptoms, and she said it was all connected. She ordered a blood test, and tested for 1 thing, Celiac Disease. As soon as the test came back, she called me and told me to get there ASAP. As soon as I got there, she came in and said "I was right. You have Celiac Disease." I didn't know what to do. Be happy that I finally know what's wrong, or be sad because I have a disease I have to live with for life. I decided to be happy about it. No more being sick. I have been on a Gluten free diet now for almost a year, and I have seen a vast improvement. I would LOVE to share this story with as many people as I can. 1 in 133 people have Celiac Disease. Not everybody knows they have it. I think of myself as a lucky one.
|
Junior Member
Registered: 08-29-08
|
quote: MysteryDiagnosisCasting@gmail.com
for 8 years 30+ doctors have told me that what was wrong with me is in my head. I have been suffering for a long time. Uncontrolled bP, anxiety attacks, confusion,insomnia, weight gain, weight loss, eyes sensitive to light, stomach bloating, bp going to stroke level when standing or walking, bp going to perfect levels when in a reclined position. behind my ears smells like feces, kidney stones, utis, chronic prostatitis, u name it. now, I finally have found a doctor at OSU medical in COulumbus Ohio to check me out. I already had 10 tubes of blood drawn, a 24hr urine test, 3 days of nuclear scans, and I have 2 days of MRi comming thye think its cushings disease, pheochromyctomas, Corotid body tumors, graves disease or carcinoid tumors. we just dont know and through these 8 years, every doc has said I have the weirdest symptoms they have ever heard of. Im sensitive to meds, i metab meds too fast, my sperm is in a silicone state and very painful. My mouth puckers painfully on every first bite and most of the time all foods taste salty, my trigs were in the 600 and dropped to normal ranges by themselves, my creatinine levels are high, and rbc, and bililibrum levels. I ahve to take 8mg of Clonidine, 100mg of captopril, 3mg of ativan daily just to survive. I spend most of my time in bed or in my recliner. My quality of life stinks and im just 38 years old. |
Junior Member
Registered: 08-30-08
|
Throughout my whole pregnancy I was alone, my husband was deployed with the USMC, and was home 2 weeks before the birth of our daughter. My daughter Caitlin was born at 4lbs 10 oz, but was supposedly carried to term. For the first 3 months of her life, she would not gain weight even though she ate like a newborn should. At 5 months they began to worry that something wasn't right when she was only 5lbs and proceeded to do blood tests to see if there was an anwser to why she wasn't growing. I got a call from our normal Peds doctor and she told me that Caitlin's ALT and AST levels in her liver were extremely high, and that could mean that she had a liver issue.
We were then referred to a GI doctor who looked extensively over her blood tests and was completely baffled. She would throw up and be lethargic ever 3 months on the dot, and she would lose weight during those episodes. After he couldn't figure it out, he sent us to a Endocrinologist. The endocrinologist found that Caitlin had almost no IGF-1 Growth hormone in her body. We started her on Somatropin Human Growth hormone shots around 2 years old, and she was only 13lbs. We did a 6 month trial but nothing worked. The Endo then sent us back to GI, where he proceeded to do a liver biopsy to see if there was anything we couldn't see outside of the liver, because her liver enzymes were through the roof still. The results came back as the liver having lots of fat around the veins in the liver, but nothing more. The GI doctor was pretty convinced that Caitlin had MCAD, in which her body couldn't break down medium chain fats. We then proceeded to go to a Specialist at the Children's Hospital in Washington DC, in which she told us that was not the case. He labeled Caitlin an enigma which no parent wants to hear. He sent us to a Geneticist.
The Geneticist who we had never seen before, clinically diagnosed Caitlin with Russell Silver Syndrome, one of the rarest syndromes in the US. She told us the likely hood of Caitlin having a blood test that would prove positive would be slim to none and to just deal with the clinical diagnosis. My husband and I were happy to receive that news until we realized that it didn't encompass everything that was wrong with Caitlin.
We moved because of the USMC, to Twentynine Palms last year when Caitlin was about 3 and 19lbs. We started seeing Dr Joel Lavine, GI doctor, Dr Lynne Bird, Genetics and Dysmorphology, and Dr Sherry Franklin, Endocrinologist, all of Radys Children's Hospital in San Diego, CA, because our other doctors in Virginia could not agree that RSS was what Caitlin had.
Throughout the last year Caitlin had extensive testing, and a few stays in the hospital to see if implanting a feed tube would help her. At this point she was only 22lbs at almost 4 years old, and only 30 inches. We did 3 months of Caitlin and an NG tube (feeding tube down her nose) and she gained about 3 lbs! So we concluded that the G-tube (feeding tube in her stomach) would be very helpful. She was still on the human growth hormone, and was thriving for her rate of growth, as she was never on the growth curve for her age, ever in her life.
Meanwhile Dr Lynne Bird, decided that it would be beneficial to draw blood from my husband, Caitlin and I to see if she did in fact have Russell Silver Syndrome, but the rarest form which is MATUPD 7 maternal uni parental disomy of chromosome 7). About a month after the test, on July 25th 2008, we received a phone call that we have been waiting for for 4 years since Caitlin was born. Caitlin had Russell Silver Syndrome MATUPD 7. With RSS the birth rate is about 1 in every 100,000 births for regular RSS and only 10% of the RSS group have the MATUPD 7. RSS is basically a type of dwarfism, although nothing is really known about the syndrome because so few have it.
Caitlin will have to have hormone shots until she hits puberty, and she will most likely have her feeding tube until shes old enough to realize that she needs about twice as many calories as other kids do.
Thanks for giving us the opportunity to share our daughters story, as it was a long journey with many deployments for my husband in between all the things that Caitlin was going through and a lot of trying times, but we are so happy now that someone took the time to figure out what was wrong with our baby girl. She is now enrolled in Preschool, and doing soccer and ballet, and is trying to lead as normal life as she can. We try to keep her feedings from her pump at home as to not embarrass her in front of others. My husband is deploying again soon, and at least he will know that our daughter is safe and what she has isn't life threatening, and I wont be so overwhelmed with all the doctors, hospitals, and the staff. Thanks for letting me share.
|
Junior Member
Registered: 08-30-08
|
I had Rocky Mountain Spotted fever without the Spots. I was diagnosed with numerous illnesses for months before the correct diagnosis was determined, I am very lucky to be alive. The antibiotic they gave me to treat me was the ONLY antibiotic they hadn't tried.
|
Junior Member
Registered: 09-09-08
|
Diagnosis: Celiac Disease, Lupus, Adnomiosis, Barrets Esophagus
My mystery diagnosis began when I was just a little girl. My mother has told me that I was always sick with childhood infections and my stomach has always been a problem. For as long as I can remember I had a distended abdomen, but we just thought it was the way I was. The real abdominal pain began to surface in 1998 when I was 12 years old. The doctors just said that I was constipated and gave me medication for it. It helped for some time but not for long. Then they said it was lactose intolerance. I took Lactaid pills that helped for a little while but then the pain became worse than ever. Everytime I ate I had severe abdominal pain and now I was also vomiting and had diarrhea. I went to a specialist who did an endoscopy and said that it was acid reflux disease. The medication did nothing for the symptoms. The doctor then decided that it must be in my head. By this time, I was losing weight. I went to another gastroenterologist. This doctor tested me and I was misdiagnosed with gastro perisis. I was put on a fat free diet and lost even more weight. I had lost 15 pounds in 2 weeks. I am very thin so I was looking very frail. I was having all of the same symptoms and now I was having joint pain in my knees. I persisted on trying one more specialist who thought I might have IBS. I tried the medication and still no relief. The pain would get so bad I missed school, and there were times that I passed out from the pain. When I went back to this doctor he had the audacity to ask me if my father molests me and then insist that I can trust him that "its ok." After this it was already 1999 and I was getting ready to go into high school and I just gave up. I had every test under the sun and I was done. I ended up in the ER several times throughout high school because I couldn't breathe and had no idea that it was connected to the disease. It wasn't until 2003 that I was working at Curve's and a member saw me doubled over on the floor crying after eating a bagel and came over to me and asked me what happened. That's when she said that I should get tested for Celiac Disease. The next day I went to my Primary Care Doctor and he ran the Celiac Panel. I tested positive. It took about 6 months to feel better, but the change was dramatic. For the first time I could eat without pain, without vomiting and wouldn't you know it...my stomach was flat.
Having the diagnosis was hard once you got that list of what you can't eat but the quality of life I have now versus then, doesn't even compare.
I thought that the diet was working and I was feeling like a million bucks. However, in 2004 I begain getting mouth ulcers. At first they were just painful and annoying. Then I began getting more of them at a time and they were much bigger, and deeper. It got to the point that it was hard to eat, talk, or sleep I was in so much pain. I would have up to 14 ulcers in my mouth at a time. I went to my doctor and I was given different medicines but the ulcers just kept coming back. Then I went to an oral surgeon and he biopsied an ulcer and it came back as nothing more than an apthous ulcer. I continued to see my Primary Doctor for the ulcers. He would prescribe Medrol (steroids) which would clear them up but then they would always return. I was sent to an ENT who did blood work and found that I had an elevated ANA. He sent me to a Rhuematologist the next morning. Unfortunately this doctor said that since I didn't have a rash he couldn't help me. However, the ENT wasn't convinced. He found another Rheumatologist and sent me to him. This doctor felt that my symptoms fit the early signs of lupus. Since I first saw the doctor I have had a full blown lupus flare that put me out of work for 2 months. I have been on a low dose of steroids for more than a year now along with several other medications to control the fatigue, joint pain, and the ulcers. Lupus is a constant battle but now that I know what I am coping with it makes it easier to deal with.
It is important to have your story heard and to be persistent. You know when something is wrong with your body. I may have given up at first and I will never make that mistake again. Never let a doctor intimidate you. You have to be the advocate for your health. There are good doctors out there that will listen and are willing to help. Just keep your head up, stay strong, and help will come.
|
Junior Member
Registered: 09-22-08
|
I have a 26 month old daughter that has had recurring fevers for about a year and a half. The doctors have done blood tests, chest x-rays, and urinalysis. They decided to give her a large dose of steroids and if her fever broke it would be PFAPA. Her fever did break but this was also the 7th day of the fever. The fevers were coming every 4-6 weeks and they last 4-7 days. The fevers are always high 104-105 with rotating tylenol and motrin we can keep it around 102 during this period. The doctors are not willing to do a lot they want to push it off as PFAPA but that doesn't seem right to me because supposedly steroids will break the cycle and it didn't. Right now I am working on a second opinion. Any ideas?
|
 | Please Wait. Your request is being processed... |
|
|
advertisement
|
