Illness: Vertebra out of alignment, five pinched nerves altogether.
State of Residence: New Jersey
Location of Diagnosing Doctor: New Jersey.
I am a 21 year old female of European descent and I have lived in New Jersey all my life. As young as I am, I had a mystery diagnosis.
The pain all started in middle school when I was in sixth grade (in 1998, and I was only 11). Most of the students had the L.L. Bean bookbags and the textbooks we had were very heavy. Also, there was the habit of carrying the bookbag on one shoulder (I was guilty of that) and messenger bags were unheard of at the time. Many of us had really bad back problems and the school nurse weighed one girls bookbag and it ended up weighing as much as a third of her body weight. As we entered seventh grade, we learned of scoliosis and after hearing the facts, I switched to using a rolling bookbag (as did many of the students). So, the year came and went, and so did eighth grade (and rolling bookbags in the late 90s weren't really that great at the time).
I entered high school in the fall of 2001, and from time to time used a normal bookbag and was in the high school band. But as a result of switching back, I ended up with more pain and I started getting severe headaches. I would just take something like Excedrin or chug a Pepsi for the caffeine kick to kill the headache. As for the problem causing it, I would chalk it up to the hat that I was wearing during the parades, football games and band competitions that we went to and the heat didn't help matters. The pattern of headaches during these events and the pattern of me taking anything to kill them would continue for a few years.
Then in early September of 2004 we were performing our first parade of the year when after we had finished marching, I noticed an extremely sharp pain in my head. I took a soda, helped put the equipment away (I helped put the band and color guard equipment away back then), and got back onto the bus with everyone else to go home. After I got dressed, the pain just escalated and I was in tears and trying to suck it up and ignore it. I could barely keep my eyes open and it was just pure hell. One of the directors handed me a cold bottle of water and I placed the bottle on my forehead. I was in so much pain that everyone was asking me if I was okay. When we got back to the high school, I could barely walk and light and sound bothered me. That bottle was warm when we got home and my face was soaked from sweat and the condensation of the water bottle. I took three Excedrin Migraine to kill the pain when I got home.
The headache persisted for the rest of that day. Then a couple of weeks later during an away game it returned and I took off my band hat, placed my flute onto the seat in front of me and rubbed my temples. Our band director asked me, "Why did you take off your hat? You're in uniform!" And my reply was "My head hurts. I need a bigger hat." I couldn't keep my hat on for more than five minutes and I barely made it through the half-time field show that night.
I could tell that he didn't believe me at first, but I reminded him about the first parade and bugged him about it. After that game, he did get me a bigger hat and the headaches went away. There was a time when I did have one headache but it was minor, however and I ignored it.
I graduated high school, and entered college. Things were going well, until one day in December of 2006.
That was just pure torture. That day my back was hurting so bad that I could barely breathe and move around. In my Macroeconomics class I couldn't sit still and I had to get up and went to the bathroom, just to move around. I ran into one of my friends and I asked her if she had any painkillers. She did and gave me two Advil. The Advil helped but my back was hurting so badly. I did see the athletic trainer and the pain was so bad I damn near went to the hospital. He asked me on a scale of 1 to 10, 10 being where I needed to go to the hospital, I wanted to say "11" but used my fingers to demonstrate. At the time I saw him I was in tears and could barely speak or breathe without being in pain. I received electric massage and ice packs that day and desperate for relief, my mom's friend gave me two pills that are normally used for arthritis pain (I was in so much pain I almost passed out). I continued the ice treatment and in time the pain subsided.
Then in the Spring of 2007 my college had its annual health fair. There was a chiropractor there (her name is Dr. Tammy Ledden and the office is in Millville, NJ) and after seeing her the year before at the previous year's health fair, I finally decided to go to the free appointment at her office (and brought my mom along, who was also suffering from severe pain like me). The severe back pain I managed to endure was my wake up call and after having x-rays done on my neck, back and lumbar region, she showed me my x-ray and explained my problem.
The problem turned out to be this: my spine was out of alignment and I had five pinched nerves in my spine, and that was causing the pain that I was experiencing. To me, it was a huge sigh of relief because I finally knew just what was wrong with me. It all made sense. I began treatment immediately.
As of September 2008: I had to stop treatment last year in May due to lack of funds, but I haven't had any severe headaches like I did before and my back no longer hurts like it did before.
My name is Kari Volk and I am 38 years old with an incurable lung disease. I live in Illinois in a farming community. Last November, my left lung collapsed and I was rushed to BroMenn Medical Center. Dr Cha Chu a pulmonary specialist at Bromenn Medical Center. I was diagnosed with Histoplasmosis related Fibrosing Mediastinitis.
I had a blockage in my left lung in one of the bronchi tubes, which had been growing in my lung since high school. I worked on a turkey farm in Strawn, IL and it is on this farm that I came in contact with antigen or bird fungas known as histoplasmosis. The histo went untreated for 19 years and it complicated into fibrosing mediastinitis.
I was on life support for 3 days while Dr.Chu determined what the mass and scar tissue was coming home. He performed at bronchoscopy and pathology ruled out cancer; therefore, histo - FM was my diagnosis.
Carnitine Palmityl Transferase II Deficiency {CPT2}
Well I'm not sure where to start with my story so I guess I will start From the beginning.
My Name is Kimbery a 44 yr old female. I remember from a very young age I was always unable to keep up with Friends running and playing , but as I got older in my teens it seemed To get even worse the more active I was ...even in gym class and Cheerleading my muscles would always get sore and tired , once I Reached my 20's I remember cleaning house would put me in bed for Hours or days unable to move or even roll over , In my 30's my job was Stressful and very physical work I was able to do things one Day ....then the same thing would put me in excruciating pain if I Done it the next week...I was getting concerned about this at this Point in my life because before I thought it was normal .. And I never Realized my muscle pain was much worse than other peoples and they was Able to still move around when they was sore and I would be in bed for Several days .....I was thinking I must be out of shape or I just Couldn't handle the pain like others could... I would never go to The doctor for this problem or never mentioned it due to embarrassment Until I was working 3rd shift at WallMart ...I was assistant manager And over the overnight stock crew at a super center ...I had to walk A lot and bend over a lot ....one morning I went home unable to Move ..so stiff I wanted to cry it hurt so bad ...I made it home took A hot bath and went to bed ...when I woke to return to work again I Tried to roll out of bed once my feet hit the floor I screemed in pain From my calves...I walked into work like a robot ....I had two ladies Working that night who kept insisting I go to the ER after I told Them my urine looked like coffee........finally I agreed to Go ...thinking to myself there was nothing they could do ...they would Tell me to get in shape !....BOY was I wrong I was shocked when they Got my blood test results and the doctors was freaking out over all My blood work ...everything was elevated Extremely ...liver ..cpk...etc ...they transferred me to another Hospital and hour away where they had specialist ...they ran test After test and couldn't figure out what was going on ..I had many Diagnoses..or possibilities of diagnoses... In three months time I was hospitalized 4 times with the same things ...my doctor wrote Social security a letter stating my life was in danger if I returned To work so I was approved for SS . They referred me to Saint Louis Washington Univ. For a diagnoses...after 3 muscle biopsies they Finally called with the results ...I have CPT2 and there was nothing Else they could do for me....no meds no cures ...nothing ...just eat Carbs...well after 5 years of hospital stays 2 to 4 times each year They seemed to be causing more and more damage...I suffered a mild Heart attack last DEC from a 90% blockage in my main artery resulting In a stent ....then after a 8 year relationship I decided to get out And move back south with my family ...when we went to retrieve my Furniture with the uhaul I had friends and family to do the work ...I Hardly lifted a finger but was stressed out and sleep deprived ...once Loaded and on the road I realized I was in much pain and unable to Bend or move ...we stopped at a station for me to check my Urine...sure enough it was black as coal ...I knew I had to get to an ER immediately...I wanted to get close as possible to our Destination..so we pushed getting there ..4 hours away ...once in the ER I showed them my urine and told them I had CPT2 and what I Needed.....they admitted me after blood results confirmed my cpk was Over 115,000 among other things ....they had me on IV fluids with a Fast drip....I don't remember much after that except having a very hard Time breathing ..I was in and out unconsciously My mother was there With me and she knew something had to be wrong (this was the first Time she had seen one of my episodes) at 6 am I stopped breathing and They called code blue ...I was taken to ccu...I had several more Episodes of this before they figured out it was fluid from the IV in My lungs ..I had kidney failure and was on dialysis and life support Feeding tubes and the works ...I woke up to weak to move or talk I Was terrified I was dying...I also had acute pancreaitis...I was Hopitalized for a whole month....but finally went home and doing well .
I will have these problems my whole life ...it will never go away or get better!
1. Introduction Carnitine Palmityl Transferase II Deficiency (hereafter referred to as CPT 2 deficiency) is a medical condition consisting of a deficiency of the CPT 2 enzymes in the patient. These CPT enzymes play an important role in the transport of fatty acids into the mitochondria, so that energy in the form of ATP can be formed, which is necessary for the functioning of the cells in question.
There are different forms of the CPT enzyme encoded by different genes, and located on different membrane surfaces of the mitochondria. These forms are called CPT I and CPT II. CPT 2 deficiency is the most common disorder, resulting in the inability of muscle cells especially to metabolize long chain fatty acids. CPT I deficiency basically causes the same problems, but then in liver cells. The most common disorder of CPT 2 deficiency is the ‘adult onset’ form, but there are also two rare infantile forms of CPT 2 deficiency.
CPT deficiency is a genetic defect of (probably) a compound heterozygosity nature, leading to a clinically heterogenous autosomal recessive disorder.
Approximately 150 patient cases have been described worldwide in the medical literature until 1995. This may at first glance imply that CPT 2 deficiency is a very rare disease. However, suspicions are mounting that CPT 2 deficiency is a vastly underdiagnosed medical condition. An explanation for this could be that a lot of CPT 2 deficient people may never find themselves in a situation in which symptoms of the disease are triggered (see later).
2. The role of long chain fatty acids The long chain fatty acid metabolism is an important energy source in the human body, especially for muscle cells.This is true for muscles at rest, during fasting, in the post-absorptive state and on prolonged exercise.
During the early phase of exercise, muscle cells rely on readily available sources of energy, such as phosphocreatinine (an energy molecule similar to ATP) and glycogen. However, when exercise is prolonged, a gradual shift occurs to fuel sources that are brought in from serum, beginning with glucose. When this energy source is also (temporarily) depleted, a shift occurs towards fatty acids as the energy source. For people with reduced (deficient) CPT 2 activity compared to normal, this shift towards the fatty acid metabolism can result in a shortage of energy that can be acquired from fatty acids, resulting in rhabdomyolysis.
Another state of the body in which muscle cells rely heavily on the fatty acid metabolism occurs during fasting. In this situation, because there is no supply of glucose coming from food absorption, the available blood glucose is spared for erythrocytes and brain functioning. This causes free fatty acids in the serum to function as the main energy source for muscles. Again, in the case of reduced CPT 2 activity, in which energy requirements cannot be met due to the impaired fatty acid metabolism, rhabdomyolysis may result.
Studies have shown that CPT activity is significantly influenced by fasting, diabetes and hyperthyroidism. Furthermore, the increased dependence on lipid metabolism in the case of severe injury, infections and the like may explain why these conditions can provoke rhabdomyolysis in CPT 2 deficient patients. Other conditions, which may result in a higher dependance on lipid metabolism (and, therefore, the triggering of rhabdomyolysis in a CPT 2 deficient individual), can include hormonal and metabolic influences. The same triggering influence in CPT 2 deficient patients can occur from changes in the phospholipid membrane compositions from nutritional factors, most (general) anesthetics, drugs and physical exercise.
It is therefore paramount that CPT 2 deficient patients try to avoid the abovementioned conditions and situations, and any others in which the energy that would be required from the fatty acids metabolism would exceed the available CPT 2 activity and capacity.
It should be noted that patients with CPT 2 deficiency also have lower levels of these enzymes in liver, leukocytes, platelets and fibroblasts.
If ONLY someone COULD diagnose me. I've had really weird symtoms that have gotten worse over the years and no one can figure it out yet. Strange autoimmune like illness. Extreme fatigue, joint pain, stomach ache, lung pains-all in the days preceding a rain storm. After the storm passes, I'm better. I can predict the weather with 90% (or better) accuracy. Problem is, I've been tested for rheumatoid, lupus, etc. Nothing turns up, and I still get sick-just getting worse it seems. I'm suspecting a anti-silicone antibodies issue from saline implants-but I've had to research this extensively just to gear myself up with the ammo to bring to the rheumatologist. No one to date even remotely suggested my illness might be implant casing related. Wish me luck folks! If there is ANYONE with similar symptoms/situation, please post it!
Hi, there has been no cure for me yet. but I have had my tubes tide for 10 year's now and every since Ive had this done I've been having abnormal period's, heavy period's or no period's for several month's. I had all kind of test and ultrasound's done but still no cure. they have even put me on birth control pill's to regulate my period's and it work's for awhile then it start's back up. I'am constantly on iron pill's and have had to get pint's of blood because I become anemic it has surely been a mess these last ten year's of my life I've had to loose several job's due to this. I just wish some one has a cure for me because my horomone's are so out of wake I've grown facial hair and I'am alway's tired if ther is help out here would someone get a hold of me and let me know.
Hi,my real name is Anastasia. Thank you so much for the wonderful show you provide,it is so helpful to so many people! My story goes like this,I have a history of crohns diease and arthritis especially of the sacrolic joints, which is very common with ibd. A year and a half ago my rheum. said I should try remicade due to the fact just getting in and out of a chair was so difficult and the pain is aweful. I agreed thinking the only thing that matters is I feel better and would be able to continue working,I have 3 children and a wonderful husband(thank God)and they have seen me threw multiple hospital stays from my crohns,they had seen me in pain and not myself so I decided to go for it,I was told it was the gold treatment for bowels and arthritis. My first treatment was in September 07'I left the office fine,2days later I woke up with horrible vertigo,unsteady gait,unable to think,heart racing but most disturbing was the numbness in my legs and hands,so I called my mom and asked her to take me to the ER which they said probably inner ear and gave me vicoden and antivert,why vicoden I'll never know,which I didn't take. It took weeks before I was able to return to work and feel safe driving. My next treatment was in October and rheum. was sure it wasn't the remicade and said to try againg only to have the same reaction shortly after beginning the treatment. Again it took weeks to feel better. Then my nightmare began. I stoped the treatments but the vertigo and dizziness keep coming,driving started to become scary because I would lose the feelings in my legs. By christmas we had a dinner for work and the dizziness was so bad I was afraid to drive home.Finally my primary sent me for mri of brain and it was clean,then they sent me to ent which showed sensorial hearing loss and was given diagnose of probale menieres disease. No improvement. Then I was sent to my first neurologist he said probable virus syndrome wait it out and gave me valium for dizziness,but I explained to him I lost my bladder at night on ocassion,I was having trouble at work with memory for example I would call in meds for patients and have to double check because I forgot what I was calling in,but he had no concern and gave the usual come back in 3 months,try vestibular rehab and see a nuero-otologits at university of Penn. So I started rehab and actually he was at that time the only one who knew something was really wrong. By now I am out of a job,not feeling any better but worse so we go to the neuro-otlogist at Penn,he spent fifteen minutes with my husband and I and said you have a complex disorder called MARD in which he just happened to write a medical article on,handed me papers he wrote and said go back to neurology and get medicine for migraines and he even said I fall when my eyes are closed because of aniexty. What is that? I worked in the medical feild sixteen years and never heard of such a thing. I told him I have migraines in the past but I hadn't had any to cause this,he replied my migraines were in my ears and doesn't know why they changed in nature. So I go back to neurology and he gives me topomax and explaines that vestibular migraines really have no meds on the market so they treat them with the classic migraine meds. I lost 10lbs in 2 months and needed a colonoscopy because of such concern although I informed the nurse at neuro. that I felt so sick and having loose stools all day and she said give it time. Then my new symptom one day as I was just sitting my thigh muscl started twitching and every day that followed after that,then I started having leg weakness just with walking,called neurology and they said he was to busy to keep my next appt. Then I was laying in bed and my leg would just jerk,as days went on the tremors started so I called neurology and she again said Dr. was to busy but she would call if a cancelation came up. I in return called my sister and mom and asked if I could stay there a couple of days because I needed help,they took one look at me and was horrified by what they saw. My sister is a nurse anest. and my mom works in the hospital. a broth-in-law who is a ER DR. and they could not believe the treatment I had been given.They called my primary and she had suspected MS and said to take me to Jefferson Hospital ER and she would call ahead. The ER gave me alot of ativan and to be honest I don't remember much of the stay,but of course they think it's all stress because the MRI came back clean again.The neurologist at Jefferson said go see a tremors Dr. as he put it and told the nurse it was psychogenic in nature,not that he cared enough to speak to me about what had been going on just gave me ativan and sent me home. Real nice isn't it,I was so upset by now that no one would listen enough to get the whole picture.it's so upseting to think you will never get better.I decided to make an appt. at John Hopkins but that would take 4 months so I called the MS foundation and they gave me Dr. Barone who was the best Dr. EVER. Dr. Barone was quiet but he listened to my husband and I and said lets do MRI of spine and lumbar punture and VEP. So we started all over again,my husband said we wouldn't stopuntilwe found the answer no matter how far or how long because we both knew this was not stress and by now I had been progressing worse. Dr.Barones office called and said he wanted to see me sooner. I was so nervous but he said everything was negative except the MRI of t-spine showed multiple herniated disc and a hemangioma,but after stating his findings he asked me to walk and was so disturbed by what he saw my posture was now bent, my left foot turned inward,my muscles were stiff,and it was now impossible to sit and lift either leg,stress does not do that,he said he wanted me to see a movement disorder Dr.at Pennsylvania Hospital who had excellent knowledge with parkinsons diseases and movement disorders,the odd thing is multiple people would ask me if I had parkinsons disease and I would get so offended,it was bad enough being to embarrased to go in public people would stare ask if I needed help,I was unable to do anything in my life I used to do. Nomore soccer games,no more cooking,life stopped. I couldn't even stand to take a shower any more only baths. I would ask my husband why my body failed me at 37 years old. When family or neighbors would see me they would cry offer support and that only made me more upset,then I met the Dr. who would give me my life back! Dr. Stephenson at Pennsylvania Hospital met with my husband and I and my son and spent so much time with us,he explained that the movement we were seeing was dystonias and sometimes they are caused by other diseases so I needed some more lab work but also gave me sinemet and artane which helps so much with the rare movements. If it wasn't for this wonderful Dr. I would still be housebound and sad that no one would listen but worse of all make me better. I still can't drive because of my legs and I'm still bent but he tries so hard to make my life better, I call every 2 weeks to give a porgress report and we work together as a team,he ordered a wheelchair and I was finally able to see my daughters soccer game without just sitting in a car or home on a couch. Illness is hard on the whole family not just the patient,people don't realize when a true illness strikes life stops,houses are lost,jobs are lost and to have a Dr. who brushes you off and says it's just stress is devastating. I owe my life to Dr.stephenson,I will never be able to thank him enough for being so wonderful and kind and caring,if only there were more Dr.s like him the world would be a better place!
I would love to see a case of PFAPA (Periodic fever aphtous stomatitis, pharyngitis and adenopathy) seen on this season.
My 4 1/2 year old child suddendly at the the age 3 1/2 started developing MONTHLY fevers every 3 weeks, he would have a fever of 104 - 105, be lethargic, have stomach pain and vomitting, occasionally have mouth sores and was very sick for 3-5 days (sometimes a week) and then suddenly he'd get better as quickly as he got sick...until the next 3 weeks came.
We went back and forth to doctors and hospital for almost a year trying to find help for our little guy. It wasn't until we were FINALLY refered to the childrens hospital that they diagnosed my guy with PFAPA. There are treatments available ....it makes me sad to think of other families going months and even years and not knowing or have doctors without the knowledge of this often unknown syndrome know what is wrong with thier child.
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
My name is Roger,this is to earache99. I have been diagnosed intersititial cystitis as well as my brother. He has been suffering in excess of 25 yrs, myself approx. 18 months . Neither of us have been able to get any help from the medicial field. We have both seen numeros doctors. Each time we both become more frustrated. Any information you could pass on to me would be much appreciated. Thanks Roger
I was misdiagnosed with fibromyalgia for over five years. I was refused test, and allowed to deteriorate. I was finally diagnosed with Lyme disease. It took seven years to get diagnosed with Elechrioisis a co-infection that left untreated can kill. I am far from alone. It is Chronic lyme disease. Many are being misdiagnosed. It passes in utero in the first trimester of preganancy. I did not receive treatment until third. It was inadiquite due to the fact that it was untreated for years. It got into my vital organs. I may have transmitted it in utero, but my child is denied test. Even the infectious disease doctor who is suppose to be a specialist in lyme disease didn't know how to treat it and refused when they found out I was with child. They did not know to run test for co-infections. Please learn the truth about lyme disease it can be chronic when left untreated and undiagnosed as I was for to many years.I saw neurologist, Rhemotologist, 3 Emergency rooms. No one would run test until a friend refered me to her nurse practitioner. She ran elise and it was positive then confirmed with western blot. See my many friends with similar stories. Watch videos. This is the truth. It really needs attention.
check out my Myspace profile and all the information I have found over the years. I am still sick after ten years and still refused IV even though it got into my brain. I have read oral anti-biotics do not cross the blood brain barrier. This is why IV is supposed to be used. Many are left like me.
I'd love to be on the show, talking about my struggle to feel good after Epstein-Barr. I have fibromyalgia, but still am puzzled with the high ESR and white cell count (only one count). My rheumatologist diagnosed me based on the symptoms, since everything else is essentially normal.
My husband (who is 29 and healthy) started experiencing head pressure in the front of his head about 2 weeks after a motorcycle accident on Memorial Day 2003. He does not remember hitting his head, but by the severity of the accident, I would not be surprised if he did. He did not loose consciousness if he did. He started getting this head pressure in the front of his head, that turns into a headache as the day goes on. He has suffered with this 24 hours a day for 5 ½ years. He has been to three neurologists in Arkansas, one in Oklahoma and went to Mayo Clinic approximately 3 years ago. Everyone keeps giving him more medicine to treat the headache, but no one has tried to figure out why he has the head pressure. He has had 2 MRI’s and a CT scan that have come back normal. He has been tested for TMJ and allergies, been to the Ophthalmologist, Chiropractor, and had acupuncture. He now gets sick easy (colds and sinus infections), gets dizzy, can’t sleep, can’t focus, wounds don’t heal like they should, runs a slight fever most of the time, and blurred vision. He gets in this state that it’s like he gets slow mentally and physically. There was an instance when he was driving us home one night and it’s like he shut down mentally and physically. I asked him to pull over and he said that he couldn’t. He says there are times when he has to tell his arms to move, like there is a disconnect between the mental and the physical. He has been on all sorts of medicine, and just yesterday was given a DHE shot that did not put a dent in his pressure or headache, when I talked to him a little bit ago he said it is actually the worse it has ever been. I have not been satisfied with any doctor, and my husband has lost all hope. Is there anyone that has seen this and can anyone give us some advice on where we can go from here?
Hi, I my self don't have a mysterious illness it is my niece. About three months ago, she started complaining about heat on her body and feeling painful headache. She is eleventh grader and now she doesn't go to school at all. We live in winter state and our climate is below zero some times in sub zero that you can't stand outside but, yet for her she can stay out side with out jacket. We have taken her to number of different doctors including dermatologist, neurologist and endocrinologist not to mention family doctor and other general medicine doctors for second and third opinion and we yet have not find any diagnosis. Can any one help please?
I am new to Discovery Health - sure need some help. I have a problem with the parotid gland on the left side. Have been to primary, ENT,oral surgeon and dentist - some say there is a blockage in the duct - some say not - but over the last 3 years other symptoms have surfaced. Sometimes these are mild, sometimes not. When I start to eat and have taken a couple of bites of anything, the parotid will start to swell - I then get numbness in my lips, tongue and part of my face. My arms will start tingling down to the ends of my fingers and the fingers will swell slightly. After a couple of minutes, I will have pain in the lower part of my stomach - on a scale of 1 to 10, the pain is probably a 4 - It is followed by a slight queazy feeling - and then a minute or so later, a pain just below the navel. Within another couple of minutes, diarrhea. I have kept food diaries twice and there is no connection between what I eat and these episodes. They are frequent - 3 or 4 times per week. There is diabetes on the maternal and fraternal side of the family, but my blood sugar level has always been good. I have no clue what is going on - a doctor specializing in digestive diseases said it was probably IBS -but he just kind of blew it off. He also said that because I have gotten scared or angry when this happens, that it is an adrenalin rush that causes the IBS. I'm not buying it ! Any help out there would be much appreciated.
Originally posted by ELIE: 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.
Elie..OMG, I also have been diagnoised with Hashimoto Thr...I began 30 years ago, after the pregnancy/birth of my daughter. From Hyper to Hypo all these years until maybe 5 years ago they gave it a "name".I am alsways changed with my mg's of lev., like daily. I had the Biopsy, Ultrasounds/etc. I think this is the base of almost all of my health issues. When my thryoid is not in range i go extreme on heat/cold tolerance & light intolerance & tremors & etc, I wish I could just find the bottom of this all, from Neuro MD's, Endocro MD's, Cardiac MD's, ob/gyn. i worry often about how this all effects your Adrenal gland too I wish you the best of luck with your dealing with this
I have seen many Dr's in many different areas of medical expertise for my issue. None of these Dr’s has been able to agree on any specific diagnosis. My guess is I have Sluder’s Syndrome or Anterior Ethmoid Nerve Syndrome. I have headaches or extreme pain weekly in my nose – mostly on the right side. No migraine meds have helped me. The only drug that seems to help is Relpax. It has me depression for which I am now under a Dr’s treatment for. I’ve also just be diagnosed with Celic Sprue. Is there a correlation? I would appreciate any help from any Dr who could help me. I am willing to travel anywhere for some type of management of this disorder(s).
Greetings, I have been told repeatedly that I am a 'walking mystery diagnosis epidose', so I am contacting you to briefly share my story. I was recently diagnosed with dermatomysositis (amyopathic variant, also known as dermatomyositis sine myositis) after struggling for almost 2 years to get a diagnosis. It's a pretty rare auto-immune disease that eventually attacks the muscles, although right now it seems confined to my skin. I'm a 36yo white male, so apparently I did not fit the patient profile of what doctors typically see. I was averaging about 3 new specialist visits a month (of varying disciplines, including allergy & immunology, ophthalmology, dermatology, rheumatology) in multiple geographic locations including Boston, NYC, Philadelphia, and most recently Johns Hopkins in Baltimore. My symptoms included swelling of both eyelids with a purplish hue and severe pruritis (which I now know to be called a 'heliotrope rash') and unusual skin on the metacarpal joints of both hands (which are called "Gottren's papules"). The rash on my hands has existed since my early 20s and were always chalked up to dry skin. The eyelid symptoms which developed in June 2007 were much more severe and uncomfortable and I could not rest until I had received an accurate diagnosis. The diagnosis was made through skin biopsy of my eyelid and skin over the joint of my hand, as my bloodwork has always come back normal. Needless to say, I am now extremely grateful to finally have a diagnosis and treatment. I am much less anxious and able to sleep (the eyelid itching actually interefered with sleeping) now and overall my quality of life is improving greatly knowing that I am finally in the right place for treatment. Please contact me if you would like any further information about my story.
Registered: 03-02-09 Posted 03-02-09 01:19 PM Hi HELP ME PLEASE!!!!!To start I like Mystery Diagnosis Theyve helped so many ppl who felt there was no hope. In December 2008 the end of the month like after christmas.I was cleaning my aunts house with shampoo cleaner called Dr.Rug I sprayed the chemicals the wrong way and some went into my noise.Every since then My hearing seems like its 3d lol I cant really explain but I feel I can hear everything,I sometimes feel like I smell something burning and I hear sirens.I am 22 Years old and I know bet. the ages of 22 and 27 ppl go schizophrenic But this seems to have happen over night. I try to talk to my doctor but she pays me no mind. Now I want to go to a theraphist to get help.I dont know what else to do. I dont think Im going crazy I just need to be tested to see if those chemicals effected my central nervous system as well as my sense like hearing etc. Can someone help me please!!! my email is sroadrunner51@aol.com I watch Mystery Diagnosis and I seen a girl on there once that was exposed to chemicals when she bomed her house for Fleas. She thought she was going crazy too. But come to find out the chemicals had effected her and she was help. This truely seems overnight to me.
Originally posted by oldladee: I am new to Discovery Health - sure need some help. I have a problem with the parotid gland on the left side. Have been to primary, ENT,oral surgeon and dentist - some say there is a blockage in the duct - some say not - but over the last 3 years other symptoms have surfaced. Sometimes these are mild, sometimes not. When I start to eat and have taken a couple of bites of anything, the parotid will start to swell - I then get numbness in my lips, tongue and part of my face. My arms will start tingling down to the ends of my fingers and the fingers will swell slightly. After a couple of minutes, I will have pain in the lower part of my stomach - on a scale of 1 to 10, the pain is probably a 4 - It is followed by a slight queazy feeling - and then a minute or so later, a pain just below the navel. Within another couple of minutes, diarrhea. I have kept food diaries twice and there is no connection between what I eat and these episodes. They are frequent - 3 or 4 times per week. There is diabetes on the maternal and fraternal side of the family, but my blood sugar level has always been good. I have no clue what is going on - a doctor specializing in digestive diseases said it was probably IBS -but he just kind of blew it off. He also said that because I have gotten scared or angry when this happens, that it is an adrenalin rush that causes the IBS. I'm not buying it ! Any help out there would be much appreciated.
In reply to the woman who is having a problem with her parotid gland. There are people who are highly allergic to a lot of foods. I would advise you to get some comprehensive food allergy testing done. I met a woman the other day in the doctors office who has allergies to almost every food, all she can eat right now is fresh vegetables, fruit, and some protein. You are having some kind of allergic reactions, could even be gluten, milk, preservatives, anything or everything. Get tests done, then you will know for sure.
I began having symptoms when I was about 21 years old and I am going on 31. I have been searching for an answer to my ailments ever since but each year there seems to be additional symptoms and problems. I have heard over and over that it is anxiety or that it’s all in my head but I am not ready or willing to take that as an answer because these problems affect me on almost a daily basis. I am hoping that you will read this and maybe be able to help me find an answer so that I might be able to get on with a normal happy life- please forgive me if I sound like I repeat myself a lot in this letter but there are certain issues that I will stress because they stand out and serious to me. When my problems all began I was living in a basement apartment that I believe had a mold problem- I started having sinus problems and decided to take some Sudafed which made me feel like I had a lump in my throat and it was a little hard to swallow- I also began having problems with feeling like I couldn’t breathe. It would come and go and I would find myself going to the emergency room a few times a week- usually it wouldn’t last long but as time went on the symptoms would last longer and be more severe. From about the age of 21 to about 25 that was pretty much my biggest complaint- I would also have occasional racing heart, headaches and usually tired. I have been on numerous antibiotics over the years now- some for true infections and others I think just because the doctor couldn’t find any other answer or solution. I was put on steroids and albuterol to treat my breathing even though tests for my lungs were always normal- I had a few methacholine challenge tests that were normal, peak flow and oxygen for the most part have always been normal with the exception of a couple times when my oxygen would drop a little and I would wake up struggling to breathe- but that seemed to resolve itself. I have had sleep studies done that were normal with the exception of a few mild apneas. I have had tests done on my heart- cpx, echo-stress test and echocardiogram- the cpx had some mild flattening of some line and the stress test showed that I have pulmonary regurgitation- I was told that none of these would cause me any trouble. I do have times where I wake up gasping for air, heart pounding and usually find myself needing cool air to catch my breath. Some of my other symptoms are with my digestive- I had finished a course of doxycycline and shortly after that noticed a lot of gassiness and abdominal pain, rumbling, gurgling sounds in my stomach almost constantly. In November of 2008 I had a sudden onset of a flashing light in my eye/vision that was like a strobe effect followed by a headache. I have had a MRI of my head and neck and nothing has been found. I seem to be very prone to infections- like sinus infections, uti’s and colds. My blood pressure recently became a problem- just out the blue and stayed up for about three weeks- running around 130/90-140/104- then just went back to normal for about a week then spiked again. When my BP is high I feel a headache and a pain in my left side below my ribs to around where my kidney would be in my back-I seem to really feel it when my BP is up. I am always tired- it doesn’t matter how much sleep I get-I just have an overall ill feeling. I get off and on low grade fevers 99.1-99.6- even though that’s not high it really makes me feel ill- they will last 2 days to 3 months. I have frequent urgent urination without the presence of an uti but almost always have a trace amount of blood in my urine. I have had some dizziness and vertigo problems that kind of come and go. I get whitish stuff on my tonsils without having a sore throat. I continue to have problems with shortness of breath, get winded when walking up a flight of stairs and will feel my heart pounding. This is off and on and not constant- im not overweight or out of shape- im 135# and 5’2”. I get itchy skin and sometimes get hive like bumps for no apparent reason or any exposure to any allergens that I know of- could this be an auto-immune disease? Sometimes I will feel a lump in my throat or like my throat is swollen- my throat will get dry and my mouth will produce excess saliva-I go through periods where I have extreme thirst. I have been diagnosed with being allergic to quite a few things such as cats, dogs, dust mites, ragweed and some molds. I also have developed allergies and sensitivities to a lot of antibiotics- I feel like im allergic to myself sometimes. I have been diagnosed with adrenal hyperplasia, thyroid nodules, pulmonary regurgitation (back blood flow from the pulmonary artery), Epstein Barr? Or the test just shows that I have had mono. High cholesterol, mild heart murmur. I also feel like I have had a lot of hormonal changes such as mood, facial hair, breast pain before my periods, and also break out with acne on my face and chest before my periods- this all just started around the time I was diagnosed with adrenal hyperplasia. I recently had a glucose test that was abnormal or high. I have been tested for diabetes and it has always been negative. My periods have become heavier, and longer. I thought maybe it was causing an iron deficiency but my hemoglobin is always good. I think I have experienced some anxiety and depression through all of this but I don’t think that it is the cause of all my symptoms- I think a hormonal problem is the cause of the anxiety and depression. I think my face has changed – maybe looks more round or fat than it used to. Could my adrenal dysfunction be caused by a tumor in the adrenal gland? Is there a test for that? Is there a way to test my adrenal function or to look for the amount of aldosterone that is being secreted? My boyfriend has also mentioned that my skin will feel hot to the touch like I have a fever but my temperature will be normal. I am hoping that all of this information will help you in giving me an answer or at least an idea of what kind of doctor may have an answer. Thank you for your time.
I have had a mystery disease for 31 years now. It started on my upper left arm and i remember it like yesterday. I noticed this itching on my arm like a noseem or something was biting me. Well the itch got so intense that it had my full attention. I kept looking at it and scratching but I could see nothing. Then it started to spread. Little white bumps spread from my arm to my entire body. They went up my nose, in my ears, in my mouth, into my intestines. I was totally invaded by these parasites. My little sister got the same thing on her arm ,then my mom and dad. my whole family and everyone I knew was getting this the same way I did. At seventeen I went to doctors to no avail...
Originally posted by CJ947: 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.
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!
I am a 27 year old female. Since I was about 12 years old, I've had undiagnosed, ever-evolving stomach troubles. It began as an uncomfortable feeling in my stomach which was immediately followed by uncontrollable shaking (as if I were cold). My body would tense up and I would feel "off," unable to move around much or do anything requiring energy. Over the years it evolved to me having to use the bathroom (once or several times in a short period of time). This shaking/going to the bathroom has never been consistent- sometimes it will happen a few times in a week, other times I'll go a few months without any problems. In the last two or three years, in addition to the symptoms mentioned already, I would also have to urinate repeatedly, despite not drinking more than a sip or two of water. 99% of the time, this problem happens in the evening, sometime after dinner (anywhere from a couple minutes after dinner to a couple hours after dinner). Gastroenterologists and neurologists have been unable to find a diagnosis, despite numerous tests. Food diaries lead to no suspicious foods. While I have learned to live with this problem (even though it gets in the way of my everyday life), I am now bothered by new symptoms. In the last 9 months or so, I have had symptoms which I never had before: random bouts of feeling "carsick," getting full much sooner than I used to, and generally feeling "off." I would love to get any ideas of what this problem might be so that I can get on with my life. Thanks for reading!
After decades of facaial and head pain, 16 sinus surgeries. DX of skull infection. Left Maillary area. Klebsiella pneumoniae and oxytoca. Could see results of infection as early as 2002 on bone scan, but no one would biopsy because the infection was located on top of my trigeminal nerve. The trigeminal is now more than likely permanently damaged and I will be on narctotics for life. ACtual DX April 2008 after surgical biopsy. Lost all my upper left teeth. I have spent over a hundred fifty grand out of pocket and have another fifty for dental and facial reconstruction which the insurance company wont pay for. This may have been the result of a fall when little or the sinus surgeries introducing the organism.
Diagnosing doc: Marc Dubin ENT GBMC Baltimore Maryland
also Dr. Mike will Plastic surgeon, ENT, facial reconstruction specialist... most of his career was spent in the miliarty rebuilding wounded soldiers faces. Interesting guy. Frederick MD
Originally posted by gdeual: I have had a mystery disease for 31 years now. It started on my upper left arm and i remember it like yesterday. I noticed this itching on my arm like a noseem or something was biting me. Well the itch got so intense that it had my full attention. I kept looking at it and scratching but I could see nothing. Then it started to spread. Little white bumps spread from my arm to my entire body. They went up my nose, in my ears, in my mouth, into my intestines. I was totally invaded by these parasites. My little sister got the same thing on her arm ,then my mom and dad. my whole family and everyone I knew was getting this the same way I did. At seventeen I went to doctors to no avail...
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!
have you ever taken an acne med called accutane?
Sjorgren's Syndrome might be a possibility as well.. it is found in the ANA sub-panels test specifically for SSA and SSB. Most docs do not do this... after years of medical testing...a rheumy finally dx'd me...she found it.
Hi I have Chiari Malformation and Syringomyelgia. I was misdiagnosed from 18 to 41 years old. Chiari is considered a rare condition but during the past 3 years I've found that there are more Chiarians then there are good Neurosurgeons to treat them. And so many are left suffering, or treated by Drs. who know just enough to really mess you up worse than you already were. I was diagnosed as depressed, tension headaches and eventually as a drug seeker. I just gave up on the Drs. and dealt with the issues. Finally when I was 41 my left side went numb from head to toe. I was terrified that I'd had a stroke or something. So I broke down an made an appointment with my Dr. He just told me that he didnt deal with that stuff and set me up with a Neurologist. Thats where my journey began and it hasnt stopped since. I'm home now and have been since November of 2007.
Well my story starts out normal for this condition. I was sent to a Neurologist by my primary care Dr. because my left side from head to toe had gone numb. The Neurologist ordered MRIs of my brain because he had done the electrical stimulation on my nerves and they showed no problems. At my next visit after the MRIs he showed me on my MRIs that I had Chiari and a Syrinx. My brain was herniated to 2 cm. Yea thats LARGE, my Dr. just told me he had never seen the brain down so low. So the Neurologist sent me to a Neurosurgeon. He confirmed the Chiari and the Syrinx. And ordered my surgery for 3 weeks later. I'm stunned, confused, scared and overwhelmed by a diagnosis I had never heard of. To top it off it required Brain Surgery. And things were moving fast. My Neurosurgeon explained Chiari and Syrinx to me very well. ( I'm one of the lucky ones, I got a very good NS) Then he offered me the choice of getting a second opinion. I declined because I had my NS and my Neurologist agreeing. So I felt I had my 2 opinions. So we schedueled my surgery August 8th of 2006. I woke up in ICU with the worst headache ever. They kept me there in ICU until they knew I was stable. Then moved me to a regular room. On my second day they had me up walking and going to the bathroom. On the third day I went home. I came home with Lortab,Flexeril and Valium. By about 2 or 3 weeks I was feeling alot better. And continued that way until 6 weeks after surgery. I then got a spinal fluid leak at the Dura Patch Site. So my NS put me back in the hospital to put in a lumbar drain. in my lower spine to drain off the extra fluid. That went well until about 3 days after the surgery because there had already been a few revisions of my shunt placements. They kept clogging up. On the 3rd day my appendix burst. It was another 3 days before they did an emergency surgery to find out why I was in such sever pain that had nothing to do with my head. They found that my appendix had burst. And that the infection had spread through out my body. It ate my Dura Patch plus another hole in my head (not at surgery site). So that put me near death and they kept me under heavy sedation so I really dont remember all of this. I was told later by my family and reading my medical reports. I was moved from my hospital and NS to OU Medical in Oklahoma City. I was put under the care of a Professor of Neurology. Plus I had many Drs. still learning that are responsible for helping to save my life. I know that I will never know them but I owe them a Great Big Thank You.They put a vacuum on my appendectomy site to suck out the infection. (didnt know this could be done). They redid my chiari surgery, continued shunt revisions, and had Plastic Surgery figure out a way to get tissue to cover the new hole. When they had the tissue they did another surgery to cover the hole caused by the infection. All this time they continued to vacuum me. I was in CCU for 6 weeks and tube fed. I finally became coherent one day and my mother was there. The next time I became aware my husband was there. I finally was able to start asking questions and found out this had been going on for 7 weeks. They started slowly answering my questions. I was confusing my drug travels with real life. They helped me seperate them. It was hard to figure out and 2 years post op I still find questions LOL. About a week and a half later I actually got to come home. I couldnt walk without a walker. I couldnt hold anything heavier than a cup. I couldnt even write. I had to have Physical Therapy. I finally got stronger and better but some things didnt get better. My balance is still bad. I will have some of my issues forever. I ended up with a chronic pain condition called arachnoiditis with a cyst. That has left me disabled. So I spend alot of time every day giving support to other people. And researching this crazy condition. But I do enjoy it. And I dont feel sorry for myself or expect anyone else to. I see it as happening for a reason. So I can make the best of it. But being happy to be alive is a big help. I had my NS Dr Ben White and all my Nurses tell me that they thought I would die. That will make you see things in a good light LOL. Now I'm 3 years post op and I have memory problems, walk like a duck, or drunk, I cant move my head when walking or I will lose my balance. If I move to fast I lose my balance. Bending over makes me dizzy. I have arachnoiditis thus chronic pain plus I still have headaches and my left side is still numb. I just tell this so people can understand some of the things that can remain after decompression with my kind of complications. Some are lucky enough to have complete recovery and move on with their lives. I am still under the care of my original Neurosurgeon. He set me up with a Neuro Dr. that deals with my headaches. He set me up with a Pain Management Dr. for my Arachnoiditis. I just finshed seeing him and hes sending me on to a Dr. who treats chronic pain with medications. He had tried the Physical Therapy, Lyrica and Neurontin but I recieved no relief. And its cool because all of these Drs. know and work with my NS. So I dont have to explain or prove how bad my condition is. My NS does all of that for me. It really upsets me when I hear about the problems others have just finding a good NS. Even with all my problems I feel lucky because I have good Drs. And thats so important because they have the quality of our lives in their hands. And most just seem to not care or havent bothered to stay up to date on new things in their Field Of Medicine. So alot of people are worse or no better after this surgery. Every Neuro Dr. should know all conditions that may arise in their field. And how to treat them. The symptoms of Chiari/Syrinx can mimic so many other conditions that people are rarely diagnosed before things get really bad. And thats just unacceptable when all it takes to correctly diagnose this condition is an MRI with contrast and someone who knows what chiari is to read them. Its a condition that most are born with, our skulls do grow big enough for our brains to fit so it gets pushed down into the spinal cord space and the problems begin. There is no set age group for chiari. Some people have symptoms as babies or young children up to senior ages. Some have it an never become symtomatic. Others start symptoms young like me but always misdiagnosed until permenate damage is done. We need more Drs. who know this condition and more good surgeons to treat it. Thousands end up with complications and this puts us out of the work force and all that includes. And getting disability is nearly impossible. Thers alot of disabled chiarians simply because we do not have good Drs. I could go on and on about what people go thru. Its a very sad situation. And those with children that have chiari are living a nightmare. They have children with chiari and all its crazy symptoms and cant do anything to help them. And most cant find Drs. who can even diagnose it. In some cases they get a diagnosis but no good surgeon to do the surgery. All the while watching their children suffer. I have just met a lady in my town who has a 3 year old with severe symptoms. Luckily they have a good surgeon. But the decision to have the surgery done has been very hard on them. But watching her suffer is very hard too. I reach out daily to give support to people with this condition and work on bringing awareness to Chiari. I feel I'm alive for a reason, by all rights I should have died. Since I'm stuck on my couch most of the time, I get my trusty laptop and see who I can help today. This is a condition that needs awareness. I know there are more people out there they are just not getting diagnosed correctly. Therefore suffering needlessly. The symptoms of this condition are the kind that put people in bed, fired from jobs for missing work, thinking its all in their head etc. It is also a relative to more known conditions such as MS, Spina Bifada, and not so known Trigeminal Neuralgia.
I hope this story will help someone that is having a hard time.
This message has been edited. Last edited by: mod_kelly,
Yesterday, a mom who is also a registered nurse and nurse educator was charged with medical child abuse (legal term for what used to be called Munchausen by Proxy syndrome).
Will you please consider reviewing this case to bring clarity while proving innocence or guilt?
Cicero mom accused of medical abuse of her 9-year-old son By Jim O'Hara / The Post-Standard October 16, 2009, 12:27PM
Syracuse, NY - A Cicero woman was arraigned today on charges she has been subjecting her 9-year-old child to medical abuse for the last nine years.
Anne Bernardo, 40, was arraigned before Onondaga County Judge Joseph Fahey on a sealed indictment charging her with a misdemeanor count of endangering the welfare of a child.
Assistant District Attorney Melinda McGunnigle said Bernardo is accused of fabricating symptoms and illnesses in order to subject her son to unnecessary medical procedures. Given the lengthy history of the alleged conduct, it's not clear if the child really has anything medically wrong with him, the prosecutor said.
Bernardo is accused of committing acts of medical child abuse against her son from 2000 through 2009. The child will be 10 next month.
McGunnigle said acts of medical child abuse is the legal term for what used to be called Munchausen by Proxy syndrome.
Attorney Peter Grenis told Fahey in court the criminal charge grew out of a case that has been battled in family court for much of the last two years. Outside court, Grenis declined comment on the family court case where he represented Bernardo.
McGunnigle said the district attorney's office began investigating the case several months ago and accumulated evidence independent of the family court proceeding.
Fahey allowed Bernardo to be released on her own recognizance with the approval of the prosecution. Bernardo is due back in court Tuesday before state Supreme Court Justice John Brunetti.
McGunnigle said Bernardo was arrested at work Thursday after the grand jury handed up the sealed indictment and a warrant was issued. She said she and District Attorney William Fitzpatrick will be prosecuting the case given the seriousness of the allegations.
Despite that, the misdemeanor charge was the only criminal charge that could be filed, McGunnigle said. It is rare for the prosecutor's office to obtain indictments in misdemeanor cases like this.
This sounds a lot like Morgellons Disease (profiled on Mystery ER "String Theory".
quote:
Originally posted by gdeual: I have had a mystery disease for 31 years now. It started on my upper left arm and i remember it like yesterday. I noticed this itching on my arm like a noseem or something was biting me. Well the itch got so intense that it had my full attention. I kept looking at it and scratching but I could see nothing. Then it started to spread. Little white bumps spread from my arm to my entire body. They went up my nose, in my ears, in my mouth, into my intestines. I was totally invaded by these parasites. My little sister got the same thing on her arm ,then my mom and dad. my whole family and everyone I knew was getting this the same way I did. At seventeen I went to doctors to no avail...
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