Have you checked our Disease Database?

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Our 11 year-old son was first diagnosed with Meniere's Disease 4 months ago when loud ringing appeared in his left ear. This was followed by acute onset of vertigo which left him unable to walk and constant nausea. He has had a shunt placed behind his left ear and 2 gentamycin injections. He is still experiencing constant vertigo. A second and third opinion suggest an "unexplained hearing loss" rather than Meniere's Disease. This is virtually unheard of in children. We have been unable to find a pediatric specialist in this. We have been told it will take many months for him to recover. We are looking for any other children with this and wondering how we can solve the "unexplained" mystery.

I have been to my doctor and steadily. Recently I have lost a lot of weight and othert things are happen as well. I have come to terms with everything else but now I am stunned that they have done every test possiable and the same systems are there and have not gone away. Just more test, more mediciane. I am sick of this the have done every thing, I guess. Please some help before I go and the find nothing if they or anyone needs more infor I will explain futher cause it is a lengthy story. I am only 36 and have beatuiful step grand children but I do want to be around to see them grow.

I have spent the last 7 or so years and 42 or 43 doctors on my mystery. There is hope. We had all but given up and I was in a pain clinic just dealing with severe and chronic mystery pain. Finally we met a Fellow at Duke University who took the time to read the entire file and said "oh, of course I know" - It wasn't some bizarre orthopaedic pain or podiatric problem or strange unheard of rheumatology disease. I have Sjogren's syndrome. It simply didn't present classically. Now, I have spent a fortune getting misdiagnosed and I've had a number of unnecessary treatments and the side effects, but now at least I know what I have.

I just want to try and say don't give up hope. Please always keep trying to find answers and don't be afraid to seek another doctor's opinion (the good ones will welcome it). Trust your gut feelings. If you feel like you need another opinion, then do it. I was so close to agreeing to surgeries to cut the wrong parts and be "polite" - wow - my gut kept telling me to "get another opinion". Thankfully I did - and it was my third opinion that at least ruled out surgery and said "this is not a foot problem and could be autoimmune or something to do with your back." It is tough, trust me, I know. But remember, you are your best advocate. Parents know their children best and each person knows their body best.

My 17 year old daughter collapsed at church January 6, 2008. She complained her stomach hurt then passed out (kind of had a seizure-not certain), she remained unconscious and 100% unresponsive for 3 hours. She was taken by ambulance to the nearest hospital. Upon arriving there she still showed no signs of being responsive (they did chest compressions, and an IV) once at the hospital they performed many tests and procedures (blood work, cathedar, etc...) still unresponsive. Vitals reamined normal, sugar was at 108. Three hours later she woke up and didn't remember anything. We have gone to many doctors and still no answers. When my daughter first collapsed she had no breathing and no heartbeat, then she took a deep breath and remained unconscience. Help us please

HELP! My 2 year old was flown to childrens hospital on life flight, because he has a distented belly. After a week of tests and no answers, doctors are at a loss and we just returned home. His bowel can rupture at any time. I just saw a commercial about a baby girl that has this same problem. The show doesn't air until Monday, but I can't wait. How can I find out what she has? Someone please help me. Please. Email me at giboronni@aol.com

I have been recently diagnose by 2 dr.s with pseudotumor cerebri I had to do a spinal tap to confirm everything (this is last step) Unfortunately I need a 2nd spinal tap which is coming up March 6th, 2008 My doctor and my neurologists totally believe that last test will confirm everything. I went looking to see if there has been a show on this type of complication and have not seen one. I fit the symptoms to a T with the main ones being vision loss, migraines, memory loss, ringing in ears. From all I have read and explored on this it is a pretty limited diagnosis with 12000 nation wide... I have a bit to go but doctors are hurring things along knowing I can go blind < my biggest scare. Just looking for more information and thought Id see if this may be a show idea.

My boyfriend has had a bought of bad luck the past couple of months, and we have yet to get a clear diagnosis. In September '07, he was having some trouble hearing in his left ear, but nothing severe. The following month his right eye was bloodshot, and he was diagnosed with iritis (inflammation of the iris). Then a month later, he had a stroke. All of his labs were normal, except he tested positive for a sickle-cell trait and a high homocysteine level. Finally in January '08, he had sudden severe hearing loss in his right ear. None of his doctors have been able to make a diagnosis that explains how a healthy 25 yr old can all of a sudden have all these problems. When researching his symptoms, the only thing I can come up with is Cogan's Syndrome. Does anyone have Cogan's Syndrome or know anyone with it? We just want to get a clear reason for his problems so we can prevent anything worse from happening. Any input is greatly appreciated.

I am a 31 year old female who is currently diagnosed with multiple ailments, which are : IBS, Mitral Valve Prolapse, chronic rhinitis, unspecified immune deficiencies, genital herpes.
About two months ago, I began experiencing these stomach/side cramps whenever I layed down on my stomach to read a book or do other things. I also had a dull ache in my lower right hand side. I take Zinc, and, my doctor said that could be causing the cramps. I stopped taking it, and, the cramps seemed to go away. Cut to about a month later....I'm getting the stomach/side cramps again along with lower back pain, my abdomen hurts all over (though mostly in lower right quadrant). I've noticed I have a tender spot on my back on the right side, and, upon gently tapping it, a surge of pain is felt there that travels all the way through to underneath my ribcage on the right side. I'm feeling tired, nauseated, walking seems to exacerbate the pain. I've been told it's a UTI, and, perhaps, even due to the IBS. I'm taking 250 mgs. of Cipro 2x Daily, but I'm still wiped out and in pain. I've had numerous scans, ultrasounds, bloodwork done, and, aside froma UTI, I've got nada, apparently. Any ideas??

My friend is a 40 yr old female that has been suffering from stabbing like pains in legs, arms, and back, continued passing out and when waking up tends to do a upper body seizure bending at the waist and trying to sit up. The whole time, her BP elevates and she looks as if she is trying to vomit but nothing comes up. All tests, Lyme, Lupus, MS have been negative. Please help.

I am 35 years old and have been a mystery since birth to doctors.I have had doctors tell me that its in my head even though there is proof of the problems, and doctors that are a manage care provider that won't refer you out to doctors that may help you. I have a very complicated and long story. But things are getting worse the older I get and I have no help from the doctors I see,they treat the problems when they get bad then I am on my own again. My body feels like I am on fire inside,my joints ache,hurt, and swell,I get chronic infections(candisis yeast in my gi tract to simple sinus infections,etc),chronic pain and much more.I am scared for my life anymore and what really scares me I am a mom of 3 boys all with similar health issues and my youngest health is not good and no one in the family even their dad knows how to care for him or all of them.

have they ever checked to see about a malrotation of the mid gut?check it out on the internet. Good luck

Looks as though the 'Disease Database' needs to be updated. You don't even have, Mal de Debarquement Syndrome listed. It is a rare disorder but it is listed with NORD (National Organization for Rare Disorders) and has been getting some media attention.

After 2 years of being sick with a conglomerate of seemingly unrelated, and progressively worsening symptoms, I have been diagnosed with Hashimoto's Thyroiditis. Unfortunately, my symptoms have yet to be controlled by medication, and it's unsure if the Hashimoto's is the only issue at hand. Still bouncing from doctor to doctor, only now I finally have a diagnosis (yet still no relief.)

Pseudotumor Cerebri/Intracranial Hypertension is not on your database list. This is an often debilitating chronic neurologic disorder with unknown (for the most part) causes, few treatment options--and those available rarely work completely. There are only about 12,000 people in the US that have been diagnosed with PTC/IH, some of which have been treated and are doing better, some of which have gone into remission, and some, like me, who are fighting tooth and nail to find a treatment that allows them to live a normal-ish life. Because of the wide array of symptoms and the rarity of the disease (many doctors, even neurologists) have never heard of it--this would, in my opinion, make this disease an excellent topic for your show.

Did anyone see an episode that aired on the week of April 7-11, 2008 about a man with joint pain and eye problems or eye infections. He could hardly move from joint pain and was treated with anti-inflammatory medicine?

I HAVE BEEN A MYSTERY MY ENTIRE CHILDHOOD WITH SIMPLE ILLNESSES, NOW AS I AM GETTING OLDER FOR THE PAST 4 YEARS, I HAVE BEEN A MYSTERY TO ALL THE DOCTORS. ALL OF MY TESTS ARE EITHER NEGATIVE OR INCONCLUSIVE WITH SYMPTOMS THAT DO NOT GO HAND IN HAND. I HAVE BEEN DIAGNOSED WITH RHEUMATOID ARTHRITIS BECAUSE MY DAD AND SISTER HAVE IT, MY SYMPTOMS ARE NOT LIKE EITHER OF THEIRS, I ALSO HAVE AN ENLARGED LIVER AND SPLEEN, LOW WBC COUNT, PAIN WHERE MY LIVER AND SPLEEN ARE. I ALSO HAVE MUSCLE OR JOINT PAIN NOT SURE WITH PARALYSIS AND WEAKNESS AT DIFFERENT TIMES WITOUT ANY WARNING. I ALSO HAVE PCOS AND HYPOTHYROIDISM AND NODULES ON MY LUNGS AS WELL. I AM VERY TIRED ALL OF THE TIME AND NO MEDICATION SEEMS TO HELP THE PAIN, FATIGUE OR LOSS OF RANGE OF MOTION. I WOULD REALLY APPRECIATE IT IF ANYONE COULD LET ME KNOW WHAT IT COULD BE OR WHERE I COULD BE REFERRED TO SO THAT I COULD BE HEALTHY. THANK YOU

Susie Q--your post caught my eye. I too have PCOS and hypothyroidism. And the fatigue that won't go away, and horrible joint and muscle pain. I am actually on medical leave from college right now because it got so bad. I can't but wonder if there is something else that is associated with having these 2 disorders together, or if they are possibly even caused by some underlying condition, that is responsible for the rest of our symptoms that can't be explained by the PCOS and hypothyroidism...Just something to chew over.

my 13 year old daughter bleeds from her salivary glands twice a day. No doctor has figured out why she bleeds or how to stop it. this has been going on since Oct. 2007. any help would be great --all tests come back normal.

quote:

Originally posted by Dwazlzz:
I have been recently diagnose by 2 dr.s with pseudotumor cerebri I had to do a spinal tap to confirm everything (this is last step) Unfortunately I need a 2nd spinal tap which is coming up March 6th, 2008 My doctor and my neurologists totally believe that last test will confirm everything. I went looking to see if there has been a show on this type of complication and have not seen one. I fit the symptoms to a T with the main ones being vision loss, migraines, memory loss, ringing in ears. From all I have read and explored on this it is a pretty limited diagnosis with 12000 nation wide... I have a bit to go but doctors are hurring things along knowing I can go blind < my biggest scare. Just looking for more information and thought Id see if this may be a show idea.

Yes i have many of the same symptoms but my doctors were thinking that it was MS. I would like to know more information on this please.
thank you
julie

were you checked for rheumatoid arthritis also or some auto immune disease. I have had to take a leave from work 3 times in the past 2 years. I am so frustrated because there are not any doctors that can figure out what is goin on. I feel like maybe I should go to the Cleveland Clinic or the Mayo Clinic. My doctor is even suggesting taking my spleen out

quote:

Originally posted by hawaiidreamergurl:
Susie Q--your post caught my eye. I too have PCOS and hypothyroidism. And the fatigue that won't go away, and horrible joint and muscle pain. I am actually on medical leave from college right now because it got so bad. I can't but wonder if there is something else that is associated with having these 2 disorders together, or if they are possibly even caused by some underlying condition, that is responsible for the rest of our symptoms that can't be explained by the PCOS and hypothyroidism...Just something to chew over.

quote:

Originally posted by susie q:
were you checked for rheumatoid arthritis also or some auto immune disease. I have had to take a leave from work 3 times in the past 2 years. I am so frustrated because there are not any doctors that can figure out what is goin on. I feel like maybe I should go to the Cleveland Clinic or the Mayo Clinic. My doctor is even suggesting taking my spleen out

I'm in process of trying to be properly treated for newly diagnosed asthma, and be checked for adrenal problems, chronic fatigue syndrome, and fibromyalgia. And who knows what else when I see the rheumatologist....If I don't have an answer in about 2-3 months, I'm probably headed out to the Mayo Clinic myself.

I started having seizures about five years ago that were said to be, then absence or petit mal seizures. They mysteriously stopped after about a year of having them.

Then, recently, they have returned but are so much worse. My neurologist has ran all tests imaginable and all of them have turned out to be normal.

About five years ago, when the seizures started i would just "stare into space" as my teachers liked to put it. and then would go on about my day.

This time when the seizures started my college instructor and another medical instructor witnessed them and they both told the paramedics that at first i would go really rigid and then turn super limp, my eyes were always open and i can inhale but i cant exhale any thus, causing my lips to turn cyanotic.

My blood pressure always goes sky high to like 140/80. My blood oxygen level bottoms out to like 70.

I am so tired of not knowing what is wrong with me. How am I supposed to live a normal life not knowing when these are going to come?

I have gone to 2 different neurologists and still.... nothing.

PLEASE HELP OUR 9 YR OLD DAUGHTER.....

UNEXPLAINED WEIGHT GAIN ETC

At age 9 (turned 9 in Sept 07) my daughter weighs 181 lbs, the unexplained weight gain is baffeling.

In 10/2005 she was 105 lbs and now at the present date 5/16/08 she is 181 lbs

Pediatrician & Endocrinolgist don't believe it is nothing more then eatting and its not. They assume because I am heavy now that I was heavy all my life which is NOT TRUE

She is also very tall for her age at age 9 and only in 3rd grade is almost 5'0" and wears a size 9 shoe

SOME INFORMATION

March 2007 Bone Age Said 6 months Ahead Of Age

August 2007 St Joesphs Childrens Hospital Tampa, Fl

* Bone Age Is 3 YEARS ahead of age
* CBC Normal
* Folicles on Ovary

As Of 03/2008 Community Hospital New Port Richey Florida (Unexplained Throwing Up And Pain)
* Thyroid High
* Cyst On Ovary
* Lyph Nodes A Little Enlarged

As of now she is so depressed of her size she has Aneixty which she takes Lexapro once daily and also takes Prevacid for Gastritis of Stomach

She also Suffers from Gastritis Of Stomach And Mild Asthma

I have Suffered from PCOS and she has symptoms of it as well, she is also going into EARLY PUBERTY

Our daughter was always a tall child and ahead of most babies her age. She also did however stop napping at age 1 and also had trouble and still has trouble sleeping we have stopped the sleep meds.

She needs help but NO ONE HERE IN FLORIDA UNDERSTANDS.
PLEASE HELP US

I am 25 yrs old and have been at the doctors for almost a year. They don't know what I have I am tired of test after tests. My symptoms are weakness to both legs, unable to walk,run,dance,jump, I sit for more that 10 min. and I have to stretch my legs becuase I feel tightning. I walk as if I am drunk and I don't drink, I get dizzy, my hands have a tremor. I basically need to know why I can't walk right. My right foot drags sometimes and I am always falling down. Doctors have done MRI of my spine brain, x-rays of my hips, nerve ending studies and everything is NORMAL. So what is wrong? I just recently found and old friend of mine who is in her earyly 40's and she has the SAME SYMPTOMS! Also, no doctor can figure out what is wrong. Anyone with anything familiar please HELP!

Hi,

I am a 21 year old female and my problems started about three years ago when I started getting throat infections every other week. Eventually I got my tonsils removed and was told all my infections would subside. Well, I still got the infections, along with low-grade fevers every day, swollen lymph nodes, fatigue, and night sweats. I went to many doctors, was put on many powerful antibiotics, and had many, many tests and no diagnosis. I gave up after my doctor said it was all in my head, and that I don't have lymph nodes in my neck at all so I must be just trying to get attention.

Unfortunately I am still having the same problems today; fevers every day, drenching night sweats... except now I have about five hard lymph nodes in my neck/collar bone region, the biggest one being about two inches long, and I itch horribly on my neck, collar bone, head, and underarms, and upper legs. (I know that sounds weird, I'm sorry).

I don't know what to do anymore. I am too scared to go to a doctor for fear of them telling me its in my head, but I know something is wrong and I just want to fix it. If anyone has any advice or a similar experience I would appreciate a reply.

Thank you all for listening!

~ Nicola

I am just beginning to research my mothers condition as it is getting worse almost daily now.

1.) I know she has had debilitating migraines since she was a teenager. These never have been tiny headaches, they would lay her up for days if not over a week.

2.) 5 years ago she had an MRI and they found a Meningioma tumor in her brain. The doctors have always said it should be left alone as it isn't cancerous and most likely will not hurt her.

3.) To try and relieve migraines as well as other issues she was having they did a hysterectomy.

4.) Over the last year my mothers headaches have progressed and she has started to have seizures when she throws up.

5.) There have not been any doctors up here who seem to understand what may be going on with her. The frequency of these episodes has increased so much so I am worried she may end up having a seizure while driving. She has fallen hard enough to put holes in the wall and leave massive bruises on her body.

CAN ANYONE point me in the right direction? A good Neurologist or otherwise that may actually be able to get to the bottom of this?

Thanks a bundle!!! :0)

Hi I am 14 years old and my aunt has a disease that nobody can explain what it is. The doctors have done several tests, and still cannot figure it out. Should I look at medical dictionaries and websites and make some suggestions as to what my aunt has or stay out of it completely? I want to be a doctor when I grow up, so I need all the experiences I can get, but I need more opinions.

I have cyclic vomiting, which was diagnosed when I was 15 years old. It's something I've had for 10 years and I am 27 now. It's unknown what causes it exactly, but I when I get stressed physically or get even a cold, I start throwing up without stop for days that can turn into weeks. The only relief I have found is with IV zantac in the emergency room. Most people grow out of it and it is also known as abdominal migraines. However, I still get dehabilitating migraines to this day, which started causing interruptions in my life when I was a freshman in college. My last cyclic episode was two weeks ago, and I was in severe pain. I am still suffering, but doing okay right now. I take several medications to prevent the vomiting and migraines, but they don't always work.

quote:

I HAVE BEEN DIAGNOSED WITH RHEUMATOID ARTHRITIS...I ALSO HAVE PCOS AND HYPOTHYROIDISM.

I also have Hypothyroidism, PCOD, and Rheumatoid Arthritis. Along with that I have Fibromyalga, IBS, Allergies, Asama, headaches, dyslexia, and cysts that appear on my chest and abdomen right bellow the surface, they come and go and I feel a sharp pain with the lumps.

I also have trouble losing weight I diet and exercise, and still gain weight. I have had problem's since puberty. Starting with the thyroid and loss of vision in my left eye (my 20/20 vision dissapered overnight only in my left eye so bad that I could not see the big E that fills the whole screen, thankfully I can see with glasses). No doctor can keep my thyroid under control. I have a lot of things wrong with me, and they are always out of control at the same time. Please Help!

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 4 or 5 times now 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 350 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.
He has gone to a gastroenterologist and had his stomach scoped 2 weeks ago He then had an ultrasound of his gall bladder. Today (6/3/08)he had a CT scan of his abdomen. So far we have only heard that he has a small (2mm) hiatal hernia and some redness in his stomach. So far he has lost 105 lbs. in less than 3 months. I do notice that his eyes are bloodshot and don't go back to white, he has an unsteadiness and he says he is "light-headed" He can still drink apple juice and hold it down but no other solids, liquids, or semi-solids. He still suffers from headaches and has not had a BM in a long time (nothing in there), he urinates but not much and it is dark. 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.

Please Help!

When I was 17 I got a mysterius illness. I have Chronic Pancreatitis. I am now 21 and have been dealing with this for years. I have under gone 2 surgeries (gallbladder and appendix) and I also have had a pain pump installed into my spine. Yet after all the enzymes and medicines doctors can offer, there has been no reason to why I have this. My sister is also under going the same illness. Its horrible. Doctors say it may be genetic. I also have an underactive thyroid and for 8 months no menstrual cycle for me. Things are getting worse. Please any one with help or a similar situation please contact me!!!

Did they do a ACTH or itis called ATCH test on her? It checks her cortisol levels. She is Cortisal deficient. She has to take Hydrocortisone 3 times a day. If she has any kind of trauma to her body she has to take a pill. It is something that can be life threatning. She also has a shot for me to give to her if she can not take her pill.My daughter at the age of 7 had a the bone stucture acording the to the bone age of a 12 year old. And her endo feared she would be going into puberty very soon. It is a geneticic disorder and my daughter has a very mild case of it. Kids who have this are more likely to have PCOS. Symptoms she had was pubic hair (few) at age 3. Underarm hair at 4. She was also larger than other kids. I hope this helps.

quote:

Originally posted by TTFN10000:
PLEASE HELP OUR 9 YR OLD DAUGHTER.....

UNEXPLAINED WEIGHT GAIN ETC

At age 9 (turned 9 in Sept 07) my daughter weighs 181 lbs, the unexplained weight gain is baffeling.

In 10/2005 she was 105 lbs and now at the present date 5/16/08 she is 181 lbs

Pediatrician & Endocrinolgist don't believe it is nothing more then eatting and its not. They assume because I am heavy now that I was heavy all my life which is NOT TRUE

She is also very tall for her age at age 9 and only in 3rd grade is almost 5'0" and wears a size 9 shoe

SOME INFORMATION

March 2007 Bone Age Said 6 months Ahead Of Age

August 2007 St Joesphs Childrens Hospital Tampa, Fl

* Bone Age Is 3 YEARS ahead of age
* CBC Normal
* Folicles on Ovary

As Of 03/2008 Community Hospital New Port Richey Florida (Unexplained Throwing Up And Pain)
* Thyroid High
* Cyst On Ovary
* Lyph Nodes A Little Enlarged

As of now she is so depressed of her size she has Aneixty which she takes Lexapro once daily and also takes Prevacid for Gastritis of Stomach

She also Suffers from Gastritis Of Stomach And Mild Asthma

I have Suffered from PCOS and she has symptoms of it as well, she is also going into EARLY PUBERTY

Our daughter was always a tall child and ahead of most babies her age. She also did however stop napping at age 1 and also had trouble and still has trouble sleeping we have stopped the sleep meds.

She needs help but NO ONE HERE IN FLORIDA UNDERSTANDS.
PLEASE HELP US

I have a mystery diagnosis, sort of in the same vein as the post by ttfn10000. I have a 5 year old daughter that has had some troubles since birth. While carrying her, I found out in month 8 that she was too small for the amount of amniotic fluid I had. When she was born, the pediatrician said that she had a heart murmur. I wasn't alarmed by that because babies are born with them and they go away on their own. We also found out that she had reflux at about month 2. Her formula was switched quite a bit due to this. They finally put her on Enfamil A.R. with rice starch. This helped her to keep some food down until reflux ended at 7 months of age. At her 10-month check-up, her pediatrician said that her murmur sounded louder and different and we were sent to Children's hospital to have an x-ray. At the completion of that, we were instructed to go to the second floor of the hospital to speak with a doctor in the cardiology department. Heart palpitations all around!! He explained to us that the x-ray showed she had Mitral Valve Prolapse. He ordered an ECHO and it confirmed she also had regurgitation. He placed her on meds and said to come back in 3 months to re-evaluate. At the follow-up exam, we also found out that she had Transposition of the Great Vessel. This means that the blood sent from her heart to her body, had no oxygen. Open heart surgery was scheduled for October of 2004. The surgeon said that she was a miracle baby becasue of how long she lasted without symptoms or surgery. Fast forward 3 years, she was taken off meds for heart. Once meds were discontinued, she began to show signs of puffiness in her face. I immediately thought about Kidney failure of Liver failure. I must also mention, that she was on the small side from birth. She was 3 years old and wore size 24 months. We called the cardiologist to speak to him about the puffiness. He said to bring her in and everything turned out fine. I spoke with her pediatrician about the weight gain at her physical exam. That's when we found out she had gained 20 pounds in one year!! The average amount of weight gain should be between 6 and 10 pounds a year. Her doctor thought it might have something to do with her lack of sleep. She referred us for a sleep study that showed she stopped breathing 50 times an hour. X-rays confirmed that she had enlarged adenoids and tonsils. So, a T/A was scheduled and performed in Jan of this year. She is averaging about 2 1/2 -3 pounds of weight gain a month even with tonsilectomy and adenoidectomy. If this keeps up, she will have gained by the end of this year, 36 pounds. This will make her weight around 86 pounds. She also has begun vomitting without provocation and she has been complaining about abdominal pain before and after she has a bowel movement. She was referred to G.I. and an abdominal ultrasound and barium swallow with small bowel follow through were ordered. At this point, we are waiting for the results of those tests. She had labs drawn to check thyroids, etc.... They were fine. Does anyone have any ideas about what can be causing this? Should thyroid tests be repeated? If so, how often? Are there any other avenues I should travel to find out what could be causing this? She has been to a nutritionist and she said that she normally can tell just by a child walking into her office and speaking with the parents for a few moments, what is the cause of the weight gain. She said; "With this kid, I can't figure it out." Any suggestions would be welcomed at this point.

quote:

Originally posted by june1419982000:
Did they do a ACTH or itis called ATCH test on her? It checks her cortisol levels. She is Cortisal deficient. She has to take Hydrocortisone 3 times a day. If she has any kind of trauma to her body she has to take a pill. It is something that can be life threatning. She also has a shot for me to give to her if she can not take her pill.My daughter at the age of 7 had a the bone stucture acording the to the bone age of a 12 year old. And her endo feared she would be going into puberty very soon. It is a geneticic disorder and my daughter has a very mild case of it. Kids who have this are more likely to have PCOS. Symptoms she had was pubic hair (few) at age 3. Underarm hair at 4. She was also larger than other kids. I hope this helps.

quote:

Originally posted by TTFN10000:
PLEASE HELP OUR 9 YR OLD DAUGHTER.....

UNEXPLAINED WEIGHT GAIN ETC

At age 9 (turned 9 in Sept 07) my daughter weighs 181 lbs, the unexplained weight gain is baffeling.

In 10/2005 she was 105 lbs and now at the present date 5/16/08 she is 181 lbs

Pediatrician & Endocrinolgist don't believe it is nothing more then eatting and its not. They assume because I am heavy now that I was heavy all my life which is NOT TRUE

She is also very tall for her age at age 9 and only in 3rd grade is almost 5'0" and wears a size 9 shoe

SOME INFORMATION

March 2007 Bone Age Said 6 months Ahead Of Age

August 2007 St Joesphs Childrens Hospital Tampa, Fl

* Bone Age Is 3 YEARS ahead of age
* CBC Normal
* Folicles on Ovary

As Of 03/2008 Community Hospital New Port Richey Florida (Unexplained Throwing Up And Pain)
* Thyroid High
* Cyst On Ovary
* Lyph Nodes A Little Enlarged

As of now she is so depressed of her size she has Aneixty which she takes Lexapro once daily and also takes Prevacid for Gastritis of Stomach

She also Suffers from Gastritis Of Stomach And Mild Asthma

I have Suffered from PCOS and she has symptoms of it as well, she is also going into EARLY PUBERTY

Our daughter was always a tall child and ahead of most babies her age. She also did however stop napping at age 1 and also had trouble and still has trouble sleeping we have stopped the sleep meds.

She needs help but NO ONE HERE IN FLORIDA UNDERSTANDS.
PLEASE HELP US

I have been suffering from something similar. Several years back, I was having gallstone issues, which my doctors couldnt figure out. I was getting pain behind my right breast/back and would get suffer phantom odors. They ran some tests. My good cholestorol was slightly low, my bad cholesterol was slightly high, but my triglycerides were through the roof over 400. I finally had an atach so bad I went to the emergency room, I mentioned a theory about gallstones and they did an ultrasound whish showed my gallbladder was full of stones so they removed it. Since they I can't eat a lot of protein or fat. About 3 years ago I started having menstrual issues. It lengthened out from its usual 33 days to 6 weeks. I started getting white heads on my ariolas. Then I had my period for a month straight. I went to see a new GYN. She thought it was PCOS did a bunch of tests and confirmed it. She put me on Metformin, I had severe headaches, and chronic diarrhea the whole time I took it which was over a year. The entire time I begged her to put me on something else, but she refused. So I decided to take myself off. I utilized cinnamon to keep my sugar down for about a year. Diarrhea and headaches improved, but didn't completely go away. Then I started to have abdominal pain pretty much most of the time. Normally I am a stomach sleeper, and I haven't been able to sleep on my stomach for the last year and a half. Last Spring I started getting dizzy, weak muscles, and easily fatigued. Before Christmas I got a liver/body herbal cleanse which actually made my symptoms go away. But the package didn't recommend staying on it and it was expensive. I have been to see a GP and a Gastro Ent. who have doing all sorts of tests which show nothing out of the ordinary. My abdomen is distended, I have gas all of the time, my lower back nad ankles hurt, and frequently have fatty stools. I went to another OB/GYN who did another ultrasound which showed no cysts and he doubts the initial PCOS diagnosis was a correct one. He did indicate I had a Urea Plasma infection, so gave me some antibiotics. I feel like I permanently have PMS; grumpy, and in pain all of the time. If anyone with similar symptoms has any luck getting a diagnosis please let me know. Since the medical professional in the AZ are terrible I could use off the help I can get!

quote:

Originally posted by hawaiidreamergurl:
Susie Q--your post caught my eye. I too have PCOS and hypothyroidism. And the fatigue that won't go away, and horrible joint and muscle pain. I am actually on medical leave from college right now because it got so bad. I can't but wonder if there is something else that is associated with having these 2 disorders together, or if they are possibly even caused by some underlying condition, that is responsible for the rest of our symptoms that can't be explained by the PCOS and hypothyroidism...Just something to chew over.

I have been laid up in bed since Oct of 2006 with major abdominal pain, leg weekness, fatigue, neurological problems, vomiting, and major constipation.
I went to the emergency room on five different occasions, only to get a cat scan each time to be told I have diverticulitis, diverticulosis, or mild inflammation of the colon.After each Catscan I was sent to see a gastroenterologist were each time they gave me a colonoscopy and told me I am perfectly healthy one said a little inflammation.
On my third trip to the emergency room I think they thought I was not taking my antibiotics so they put me on a pic line which is were they basically put a hose in your vein in at your arm almost to your heart and send you home and tell you to change a little baloon of antibiotics to be released into my blood stream.
With the back pain from the neurological stuff I was sent to pain management to recieve in excess of 20 steroid injections in my spine over a one year period until I decided it was doing no good they still wanted me back for more injections, but I did not return.
I dont need to tell you how this had financially hurt me my Job dropped me my insurance dropped me and I then went on welfare and I am a single father and all they give me is 300 bucks a month and food stamps, after exausting all of my resources 401k vehicles etc.
My landlord started asking around were he worked at because I was getting into him for a lot of money, and one pathologist suggested that I quit eating wheat, barley, and oats. So I did willing to try anything for 19 months this was nothing low and behold I started feeling better everyday and I have a new lease on life, and if it wasn't for my six year old son there is not a dought in my mind I would have taken my life, three months into my episode because of the pain, but i would not do that to him because he needed a Father no matter how sick I was.
This disease is known as Celiac Sprue and come to find out it is so common that one in 130 people have it, it is just hard to diagnose because the symptoms copy symptoms of other diseases, and them telling me I had diverticulitis, you need to eat more fiber didn't help I started eating more wheat and oats then I had ever ate only to make me sicker.
Today is now June 22nd 2008 and I feel in a couple of weeks I will be ready to return to my Job, but I think I may have to hire an attorney to get my disability for the last 20 months and to also fight to get my Job back for family medical leave act that was ignored when I was fired for not going to work when they demanded so.
If anything is to come of this I would just like to make people, and Doctors more aware of Celiac Disease because I went threw way to much pain only to find the cure was just changing my diet. Thanks for your time if you read this Ron G.

Miss Shawn a lot of your symptoms sound alot like mine I actually had a lot of weight gain blooting and all the other symptom I mentioned above, I would suggest you quit eating glutens what have you got to lose, as a matter a fact I think that anyone with abdominal pains should quit eating glutens for a 2 week period to see if you feel better if you miss pizza for 2 weeks its fine if your health is on the line. and actually lots of other foods to beer bread etc they should put on the labels if there is wheat oat or barley, wheat is even in soup so be carefull 2 weeks, turns out my brother and sister both had it to and checkin my son next.

My name is Theresa Bishop I am 28 years old.
I went to E.R. sunday night. I had a lot of lung pain my lungs felt like bowling balls. I Told the nurse the pain was a 10. Then I saw the
Doctor. He said I was fine. Then I went home. I now have Chondritis.

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.

I had my Gallbladder removed 2yrs ago, Now here are the Puzzlers for this problem. Now i can barely eat a kids meal, my mid area expands 4-6 inches after eating or drinking anything. I have been in for numerous testing and all test have come back normal. 1 test that was taking was the 4hr xray test. Well mine ended in 45 mins cause 6 oz of that NASTY chalky stuff you have to drink had totally gone through my body in 30 min. Which stumped the Dr. But even then everything was normal. The other thing is that I am not losing weight. The Dr,s are puzzled at that too cause my husband has to force me to eat. I don't want to eat cause I know what happens afterwards. The end of everything the Dr. tells me there is nothing else thjey can do and now its up to me to figure out what the problem is and fix it myself.

Yes my diagnosis is a complete mystery. I seem to be fairly controlled and much better most of the time except for certain times of the month. Yes, medicines do give me side effects but I know I need them. It took me most of my life to find out that I had interstitial cystitis, a bladder disorder. This disorder normally strikes middle aged women and cancer patients but I have had the symptoms of the disorder all of my life. It around age two years old and continued. About that time I had severe bladder infections, incontinence, bedwetting, burning on urination, and when lying or sitting in a certain postion, especially at school or when trying to sleep. It really sucked and I cried like crazy about it and no one could figure out why I cried all the time. Whenever I would try to explain to anyone they just thought I was silly, except for my mother. Even my dad thought that I just cried for attention, but I was in complete discomfort. These evil symptoms stayed throughout most of my childhood but some disapeared during junior high school and this lead my mother and I to believe that I had outgrown my bladder problem. When I got to high school I started having problems again and during the spring of my junior year I developed problems urinating along with the other symptoms. Talk about disaster. Throughout my life I had been to three different urologists and none of them had any answers. When I was five I had an ultrasound of my bladder and that was normal and two years later I had an xray of my bladder. That too was normal. The second urologist did not feel that there was anything to be concerned about and of course my mysterious bladder problems continued for years to come. I was out of control like crazy with bladder problems by the time I was nineteen years old and my mother made me an appointment with a urologist that she knew from work. When I went to see him she and I explained the symptoms and he did a cystoscopy which he felt revealed some irritation but was still perfectly normal. When I went back for my followup visit and found out the true results I felt that he was giving me the impression that he thought I was a hypochondriac and that mom was crazy. He also told me that it was normal for girls to experience bladder discomfort, yeah right. Though I was given medication adn instructed to return in six months I took the medication but did not return. I continued to have problems and like before I had trouble sleeping at night due to constant discomfort and am still barely able to attend college, let alone work when I have flareups. Four years after my last visit with my third urologist I happened to come accross Dr. Laudenbach, my current gyencologist and pondered on making an appointment. I findally did thinking that she may have an answer to my constant agony, but I was worried that she too would be like everyone else since I was a young and a virgin. When I walked into the exam room at her office a nurse took my chart and listened to every word that I had to say and seemed fairly concerned. A few minutes later Dr. Laudenbach walked into the room and just listened to me and my mother describe the symptoms before she examined me. She asked my mother if anyone had ever mentioned that I may have Interstitial Cystitis a bladder disorder that does not always show up on tests and I said no. Dr. Laudenbach examined me thouroughly and concluded that her diagnosis had been confirmed that I have interstitial cystitis. I have been on Elimiron medicine for the disorder and I have not had any episoded of incontinence while on the medication and seems to work well most of the time, although right now I am being referred to a doctor two hours away who specializes in treating this disorder. My burning seems to be fairly controlled too and for about a year I did not have any burning in the bladder or painful urination. I am thankful that I have been diagnosed with this disorder and it has taught me not to take no for an answer. This is my advice to patients and family. If you have any health concerns dont be shy about it and keep searching until you find an answer even if it means seeking several different opinions. Parents should inform teachers about children's health needs at all times and if the teachers refuses to listen talk to another school administrator about it. Since it took me this long to find a diagnois I feel I would be a good canidate for an upcoming episode of this show.

yes it is. I have intersitial cystitis and was diagnosed with it four years ago at the age of 22 years old. I was extremely young for that disorder and I was a virgin. I have had bladder problems since I was a baby and no one knew what was wrong with me. My mother took me to three different urologists and they each one run tests on me and all of them were normal. Since the age of about two years old I have had burning in the bladder while lying down, bedwetting which worsened in high school, incontinence, buring when I pee, and difficultly urinating which developed during the spring of my junior year of high school. That made me so mad that anyone would think that I was crazy and they did except for my mother who is a nurse. Due to the fact that I did have some other problems teachers would not let me go to the bathroom during class and this really upset me. Regardless of what happened I always took a restroom break in between class periods and twice at lunch. During the spring of my first year of college things got so bad that I felt that I needed to see another urologist and once again mom made an appointment. This urologist performed a cystoscopy and it revealed some irritation but he felt that it was still perfectly normal. He also told me that this was normal for girls to get bladder problems and that some girls get them more than others do. he told me to come back in soix months and gave me some medication to stop incontinence which did not work and I did not return. Finally about four years later during the spring of 2004 I came accross my gyenecologist Dr. Laudenbach and decided to schedule an appointment for one month later hoping that she would have some answers. So I did but at the same time I was worried that she would think like everyone else. When I walked into the exam room at her office the nurse took her time upon listening to why I was there along with my medical history. A few minutes later Dr. Laudenbach walked into the room and she really listened to every symptom that I described. The first thing that she asked my mother and I was if anyone had ever mentioned that I may have interstitial cystitis and we both told her no and that I had been to three different urologists. She did a complete thorough exam of my pelvic area and determined that indeed I did have interistial cysitis. I am now on medication for the disorder and it has helped me a lot and I am finally able to finish school.

quote:

Originally posted by unknown dianoses:
I started having seizures about five years ago that were said to be, then absence or petit mal seizures. They mysteriously stopped after about a year of having them.

Then, recently, they have returned but are so much worse. My neurologist has ran all tests imaginable and all of them have turned out to be normal.

About five years ago, when the seizures started i would just "stare into space" as my teachers liked to put it. and then would go on about my day.

This time when the seizures started my college instructor and another medical instructor witnessed them and they both told the paramedics that at first i would go really rigid and then turn super limp, my eyes were always open and i can inhale but i cant exhale any thus, causing my lips to turn cyanotic.

My blood pressure always goes sky high to like 140/80. My blood oxygen level bottoms out to like 70.

I am so tired of not knowing what is wrong with me. How am I supposed to live a normal life not knowing when these are going to come?

I have gone to 2 different neurologists and still.... nothing.

My oldest son had seizures similar to your most recent ones. He had them in infancy but was never diagnosed until his mid 20's. He was diagnosed with Temporal Lobe Seizures and treated with dilantin.

Good luck.

I also have a mystery health problem. It's been going on now for 5yrs.
It started back in Nov of 2003. I woke up,got out of bed and fell straight to the floor. My right leg would not support me. It felt like it was asleep and there is a bit of a tingling feeling in the thigh. So at first I didn't think anything of it. I started to worry when it didn't get better after a few minutes. I had to crawl to the phone to call my husband to come home and help me. We had a 2 1/2 yr daughter at the time. My leg eventually went back to normal. About 6mo later, it happened again, though not as bad, I didn't fall, but my right leg was weak and it felt like my knee buckles and that my leg can't support my weight. Sometimes it happens everyday all day, other times I can go weeks or months with no problem. I have been to several neurologists. I have had several MRI's and am about to get a CT of my abdomen(though my dr doesn't think he'll find anything wrong there), and then another spinal tap. Everything has been coming back normal. My dr has no clue as to what is causing this. Does anyone have any idea what this is?

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

We are in need of help..My husband is having swollen limp nodes with shooting pain to his head and weight loss with body pains now for about 2 weeks..He just got out of the hospital they can't find anything wrong with him..All blood test are ok the CT and MRI shows nothing..They said maybe its a bacterial infection they have him on 2 different drugs and something to help him sleep but still nothing..

Regarding Habba Syndrome..Does anybody know of a Doctor in the Washington DC area that believes in this and follows the testing and treatment protocol?

Hi, I am unicorn88 and this is my first time here. For the last 8 years and 1 month I have been having leg pain that has baffled every doctor that I have seen. In June, 2000 I had Total Knee Replacement done on my right knee. The day after the surgery at about 2am my leg shot straight in the air and had spasms going up and down my leg from my thigh down to my foot. It took a total of 3 nurses to pull my leg down out of the air. I also started screaming and passed out from the pain. They couldn't give me any more medication because I already had hit my limit for the time period. Then about 10am they took me to therapy and I was having trouble getting my right leg bent to do the slide. The therapist came over and just touched the back of my leg and all I heard was oh my God from the therapist because my leg shot straight in the air and I screamed and passed out again. They sent me back to my room and had a x-ray done of my knee to see if there was any damage to the surgery. No there was not. They sent me home and I started regular therapy, but my mom would have to come in my room in the middle of the night just to pull my leg down out of the air and rub the back of my leg until the spasms stopped. She would literally have to lay across my leg to hold it down until the spasms stopped. It really was so very frustrating and exhausting. I still cannot bend my right leg because it shoots out and keeps going into spasms. I cannot sit for any amount of time because then I have to get up and walk but then I cannot walk to long because I have to sit down. Doing that for 8 years, I am tired and exhausted and still in pain.

I have been to so many doctors over the last 8 years and nobody can seem to figure out what is wrong with me. I was supposed to have a Total Knee Replacement done on my left leg in 2001 but we cannot do anything until my right leg is fixed. I have been to any kind of doctor imaginable! Orthopaedic Doctors, Nerve Doctors, Neurologists, Pain Management Doctors, you name it and I have been there. I have had nerve tests, sonagrams, MRI's, CAT scans, X-rays, you name it I have had it. Right now I am having trouble sitting here typing this to you, so I better make it fast. It takes 3 of my muscle relaxers to try and calm it down. Sometimes I have to take 2 or 3 doses a day all depending on how my leg is acting. I am also on Hydrocodin for my left knee until we can get that operated on. I have been to the emergency room so many times for my left knee pain. Can't do it until my right leg is fixed. My poor orthopaedic doctor is so angry thst he cannot figure this out. One orthopaedic doctor told me that I am just going to have to live with it. I am on Disability and Medicaid. I even have a power chair in case I really cannot walk. Right now I am waiting to see a doctor up at Marionjoy in Wheaton, Ill, but I cannot get an appoint until I call back in September because they are so booked up. Then I have to start expaining to them from scratch and bring them up to date. I don't sleep at night because my right leg is jumping all over the place. I am in pain, tired, exhausted, frustrated and don't have a clue in sight. Help me please. 8 years is 8 years to long.

I have had an intense headache for over three years, and it's brought me to the brink of suicide. Just prior to it starting, I had bronchitis, and the constant coughing made my head feel like it was going to explode. Medication got the bronchitis under control, but the headache remained. It feels like intense internal pressure in the front of my head with slight throbbing; it feels centered between my eyebrows, inside my skull, and it radiates back to my temples, up my scalp, and down into my face. The pain intensifies with any kind of physical strain--merely standing causes the pain level to slowly ratchet higher. Driving or riding in a vehicle pushes it up just as far as jogging. MRI's and CAT scans came back normal; even the spinal tap provided no clues--though the decompression headache actually hurt worse than the usual one, so I suppose the perspective gained was a benefit of some sort. Several general practicioners, a couple of neurologists, and a multitude of drugs have done their best, but nothing reduces the pain even slightly. I feel like I'm hanging on to the end of my rope by my fingernails.