Comments:

• Loie (September 24, 2012, 13:30)
  
  I want to share my story as it may serve as a starting point for those of you who are suffering from undiagnosed pain and illness. In 2008 I was suffering from a variety of symptoms including fatigue, weakness, severe upper back pain, un-coordination in my legs and a burning sensation on the bottom of my feet when walking. I was 66 yrs. old and felt I would either be in a wheelchair or at best using a walker in the not too distant future. I had, within the previous two months of the onset of these symptoms, changed from drinking bottled water to drinking filtered tap water using a counter-top filter system. This change was the only thing I could determine that might be the cause of my symptoms. I thought it might either be the plastic used in the pitcher or something in the filter itself. I returned to bottled water and in 24 hours I was absolutely pain and symptom free! My good health continued until 2010 when I again returned to drinking tap water. My kitchen remodel included an under counter filter and separate water spigot. I was hesitant to start drinking tap water again, but rationalized that it would be alright because the remodel also included all new plumbing. Within approximately 7 weeks after starting filtered tap water I made the following notation on my calendar, "my body feels way off kilter." I did not connect my symptoms with drinking the tap water. I continued to drink the filtered tap water for almost 2 years. August 14, 2012 I changed back to bottled water. I suffered from the following symptoms during the almost 2 years I was on tap water: vertigo (I had various tests, an MRI of my brain, a visit to an ENT all without success. No cause was found) . The vertigo lasted about a year. Other symptoms were fatigue, weakness, an assortment of aches and pains throughout my body some of which caused frequent muscle cramping and the inability to sit for more than 30 minutes at a time, a severe cough that lasted for a month, inner ear infection, rash and red patches on my face, constipation, chronic hip pain that could not be relieved with stretching or pain relievers, feverish feeling without having a fever and a feeling inside my skull that made my head feel heavy. The idea occurred to me that I may need to replace my water filter, so in the meantime I switched back to bottled water. AGAIN, in 24 hours I was absolutely symptom free. I started my research on water related diseases and the one thing that kept popping up in articles was the possibility of fluoride poisoning. I discussed this with my doctor, and she did not disagree. I have not had blood testing done in order to determine what in the water may be the cause, but I know that something in the tap water is the culprit. I have a detailed report on our city water and also the bottled water I am drinking. I have read articles of research done on patients who, in fact, have had the same symptoms I suffered from. When taken off their tap water containing fluoride, their symptoms have improved in time and have been eliminated. I now cook with bottled water, either squeeze fresh oranges for juice or use frozen concentrate and bottled water, I use toothpaste with no fluoride and any wine I drink will be from Italy or France where no fluoride is used. My theory has not been confirmed by my doctor. This is my factual experience. I truly believe it is related to tap water and perhaps the fluoride simply because on two separate occasions I have been able to eliminate all my symptoms when I stopped drinking filtered tap water and returned to bottled spring water. My late husband suffered from a chronic pain in his chest that was not cardiac related. So many visits to so many doctors and so many tests did not bring a diagnosis. I know how it is to be in constant pain and desperate to find a diagnosis. I'm fortunate that I found at least a partial answer to my problem. I hope that learning of my story may help someone suffering from pain.
  
  
• Aimee (September 23, 2012, 00:15)
  
  In the past two years I have been dx with SLE, Lupus Profundus, Lichen Planus, Sjogrens and mild adrenal insufficiency. I have been referred to a specialist cardiologist who has a three month wait list for what two of my doctors (cardiologist and rheumatologist) think is Autonomic Dysfunction. I was in the hospital for a couple of days earlier this month as I was not able to stay awake for more than three hours and usually more like 30 minutes to an hour - enough time to get up, go to the bathroom and eat. Usually I just ate what was in my pantry which wasn't always nutritious be I was too exhausted to make anything. The day I went to the hospital my blood pressure was 82/40 and I had other recent drops in blood pressure causing me to feel like I'm going to pass out. Currently I have orthostatic hypotension. At first my heart rate was jumping to 130-140 when I would stand and now it is going between 150-160. I find myself in bed a lot due to the extreme, extreme fatigue I feel. I have a long list of symptoms and other dx such as sleep apnea, gastroparesis, reflux which has worsen, osteoarthritis in many places, back problems as seen in MRIs, 2x in last couple of years have wore a boot on my left foot and been on crutches because of pain when walking on it, muscle weakness, headaches all the time, migraines, stiff neck, joint pain, low grade fevers which I tend to run more in the summer with the lupus, lots of rashes which have been better controlled since going on Methotrexate, frequent sore throats, blurry vision at times and I feel I can't see as well but opthalmologist said I really don't have much change in my glasses which I was totally suprised at, pain/aching in eyes which opthalmologist said is due from drying, four miscarriages before 5 live births, fertility treatment with 4 miscarriages and first two live births, never had regular periods, hyperparathyroidism secondary to vitamin D deficiancy, have to stay on Vitamin D and B12, even when taking 2000 units of vitamin D a day still was under 30. photosensitivity, chronic pain for at least 15 years. I am currently 53. I raised 5 children who were all born within 6 years, worked several jobs at a time, obtained 4 college degrees, and currently I work full-time and as adjunct faculty at a local university. However, things just get progressively worse and about all I can do now is sleep until I work a 1/2 day currently and then come home and sleep more. My life has changed drastically - rarely attend church whereas before my granddaughter always spent the night with me on Saturdays and we always went to church on Sunday. Back in the spring on several occasions all 4 of my grandchildren would spend the night (ages 9, 4, 5 mos and 3 mos) and I would take them all to church. Since March of this year I have taken short-term disability 3x and am currently on short-term disabilty since August 29. I'm trying to transition back to work as I am almost out of FMLA and fear losing my job which would make things extremely difficult since I am my sole supporter and don't have any savings. Also, I fear I will not be able to work like I use to because of the extreme fatigue, blood pressure/pulse problems, lupus etc. The rheumatologist who dx me with lupus felt I had it a very long time due to things like being hospitalized as a baby with failure to thrive, pleurisy as a teenager, multiple miscarriages, chronic pain and fatigue. I can remember even as a teenager being extremely tired and having a hard time getting up. Currently I start work at noon which seems to work better for me. I use to be a night owl but not anymore. Also, I am frequently anemic which I'm told is due to inflammation process and so have to be treated for underlying causes. My labs don't usually look all that bad for everything I have and so I often get your labs look good and feel like I sometimes don't get dx for a long time or don't get dx. I am extremely frustrated right now because I feel like my body is failing and/or attacking many parts of my body but my blood work "looks good". I have documented many times when bp was really low at a doctors office or had orthostatic hypotension because sometimes I don't feel I'm taken seriously and need the proof from professionals. In the past was dx with diabetes 2 but now A1C stays below 6. I constantly research my symptoms trying to find answers but I need more help.
  
  
• Sally (September 22, 2012, 17:29)
  
  My brother-in-law is 51 and has what "looks like an unusual enzyme" in his stomach that they have never seen. He had sudden extreme dizziness, sickness and then lost 38 lbs in 3 weeks, can't finish a sentence, can't remember. "Possibly" a small stroke along with that odd enzyme. If he eats, he can't eat more than 2 swallows and everything, even water, tastes bad. Everyone is confused so they just keep sending him home with the standard drugs - which have no effect and he is getting worse. Can your organization point me to anyone that can help?
  
  
• Linda (September 22, 2012, 16:45)
  
  Did you check her body inch by inch for a tick? It might be in her scalp and I would do a methodical check.
  
  
• Jan UK (September 22, 2012, 15:30)
  
  Did Brianna Skriver suffer from a flue-like illness just prior to her 'mystery illness' as I learnt of a similar case when studying for a biology degree with The Open University. A 19 year old man had 'flu' slept and when awoke found he could not move except his head. The illness, very rare had affected only 9 people in the world at that time (12-15 years ago) and in each case had affected the nerve centres on either side of the spinal chord so that the proprioceptors were not able to send information to the brain. Feeling was lost but pain was in normal range. I do not remember the name of the illness. This young man was the only one who taught himself the control of each muscle in his body which was likened to his brain working to juggle 20 balls in the air at once all the time. He could only do this with visual feedback so collapsed in the dark. This is what I call miraculous courage and determination and his will-power enabled him to lead a life which would otherwise have been spent bed-bound.
  
  
• Anonymous (September 22, 2012, 15:19)
  
  What bout Lyme disease? This went undiagnosed for years until my Grandaughter was finally seen by a specialist in that particular diease.
  
  
• Need help to get diagnosed (September 22, 2012, 13:11)
  
  I have myopathy with no obvious reason. Means that doctors can not find the type of myopathy with several different test and tools they had available. First I lost ability to climb stairs fast. Then stopped running. Later stopped Being able to climb stairs without help of the rail and only a few short ons at the time. Now I can't walk without falling or am scared to fall down when I walk. It's getting worse. I am 40 year old male and this symptoms started 10 years ago. I have had two different muscle biopsies one at ucla and the other at USC both under the care of the head of their nuromuscular desease program. Everyone is so far puzzled and can not connect the dots together. My EMG shows myopathy waves, but biopsy showers abnormal characteristic of a mysterious kind. ( unknown to the doctors who have tried to diagnose me) I have no history of familial myopathies on either side. I know up to 3 generations past.All of my first and second cousins are healthy. At this time doctors just want to observe the progress of the desease, but I am sure that my case can offer something to the world of medicine. Eventhu I know that there is not much of a cure available for even the known myopathies, I would like to have a name for my myopathy and deep inside I hope that maybe this is not a myopathy.
  
  
• Cynthia Striplin Victor (September 22, 2012, 04:18)
  
  I need help. I have to cath. at least 3 times a day now. I have gone from being a very muscular woman to my muscles degenerating to nothing. I have been to every specialist known to man. I was diagnosed with Lyme, then they changed their mind and said no, it looks like lupus, then no not lupus, it looks like MS. Now they say I do now have MS. Doctors found 3 white lesions on my brain. This was rechecked later, only to discover that now my brain is covered in tiny white lesions. My hips and low back are in excruciating pain. My left hip was so bad, that the doctor cut the nerves with high radio frequency to kill the nerves. Now the other hip is getting just as bad and I will have to get the same procedure on my other hip and middle back, as well. Blood Vessels are streaking down my face now. They say I have vasculitis. They have told me that my red blood cells are enlarged, but don't seem to know what that would mean. I know you must have hundreds of thousands of request for you help, and I doubt you will even have time to read my post, but if you could find it in your heart to allow me to be part of your study, I would be forever grateful to you. I truly have no life at all, due to my illness. I have so much to live for, that it is so difficult to see my world go by, without me participating in my children's lives. I want to live for my children and grandchildren. If it would even be possible for you to instruct my doctor on what tests to run on me that may help you to eliminate anything you see possible, before I come to see you, I would be happy to do that. Anything, any ideas, anything. I am at the bottom of the pit and there is no where else to turn. UAB in Birmingham, AL. is a teaching hospital and they can't determine what is wrong with me, even though the signs and symptoms are there. Shelby Baptist Hospital Doctors in Alabaster, AL. cannot give me any answers to the horrific pain that I am in.. The infectious disease doctor ran all kinds of blood tests on me to rule out anything that he knew about. He had no answer. The cardiologist found nothing wrong with my heart, but I continue to have chest pains on and off. My brother passed away from this same condition. My mother has the same conditions with most, but not all the same symptoms. My brother cannot be saved now, but my mother suffers severely every moment of the day and night. She has had test after test, to no real diagnoses. It must be highly genetic. I was so happy and healthy, exercising every day. The next thing I know, I am in excruciating pain, I have cycles of illness with low grade fever, jurking, chills and I become very dehydrated no matter how much I drink. I usually have to go get 2 large bags of IV fluids to help me. I know there are so many more important people than myself, but if you could at least look over my medical records and see what you think, I would be so happy and appreciative.. My pain management doctor has started me on pain management. She is also a Certified Neurologist and is puzzled by my illness. So is every other doctor that treats me. Please Please search your heart and at least let me get my records together for you. You may not think you can help me, just by seeing all my symptoms. All I ask for is a chance to find out what is wrong with me and possibly get some help. Please call me at 334-412-3428 or 334-875-2713. Or you could email me at jvictor937aol.com My address is Cynthia S. Victor P.O. Box 1088 Selma, Alabama 36702. Please give me a little hope by contacting me somehow. I just need a little ray of hope to want to live. I don't want to live like this. I do however have much to live for and would take any risk, and test, and hope of a better day to keep going. You are my last and only hope for finding out what is wrong with me. I will suffer through any tests without a complaint. I just want to have s day of no pain. I have lost all hope of a diagnoses and you are my very last hope. My father faught to bring interferon into the United States. He finally won and it has been used for many things here in our Country ever since. He was a great man and was involved with many facets of the Medical field. He passed away 8 months ago after a decade long battle with dementia. He to, had many health problems. I know if he were here today, he would tell me to contact you. I always though of UAB Hospital in Birmingham as a great hospital. If they couldn't find out what is wrong with me, as well as a multitude of other doctors from around the United States, thenI know you are my only hope. Please I beg of you, please help me in some capacity. I will be glad to have my medical records sent to you. God Bless You for all those people you have helped. I know God will have a special place for you in Heaven one day. God has put it on my heart to write to you. I will continue to keep you and your colleagues in my prayers. Thanking you in advance for your reply. Cynthia Striplin Victor Selma Alabama
  
  
• julie andrews (September 22, 2012, 03:24)
  
  When my daughter was born she was appeared to be perfectly healthy, pregnancy, birth and her first year were all normal - in fact she reached all her milestones early. Suddenly with no warning at 15 months she went from having a cold to being unae to awake the next morning. At the local ER she was given a lumbar puncture and a ct of her head. Her spinal fluid was cloudy but no bacteria was found in the culture. I vaguely remember something about an infarction that was noticed on the ct, but she was diagnosed with viral meningitis, and we we came out of coma after 1 week and was discharged after another. She seemed ok, though somehow a bit "off " irritable, and not as
  
  
• julie andrews (September 22, 2012, 03:08)
  
  Necrotizing encephalopathy...my daughter is the only child I know with this diagnosis. Is it a disease or a set of Symptoms ? After 3 flareups at 15 months, 27 months and 3.5 years old. She had 9 healthy years. The damage that had been do.e by the earlier flareups was undeniable. Her gait was unusual, her speech difficult to understand, her developmental age somewhere between 3 to 4 years, but rarely sick, and boundless energy and always exuberant and upbeat. Suddenly this past memorial day, she got a cold, and started acting very letharic, it didnt even seem likely that it was the same thing. I had assumed she had outgrown it. It is now the 3rd week of September, and going into the 5th month of being in a coma. Her MRI shows significant brain loss, and areas of infarction.
  
  
• julie andrews (September 22, 2012, 02:47)
  
  When my daughter was born she was appeared to be perfectly healthy, pregnancy, birth and her first year were all normal - in fact she reached all her milestones early. Suddenly with no warning at 15 months she went from having a cold to being unae to awake the next morning. At the local ER she was given a lumbar puncture and a ct of her head. Her spinal fluid was cloudy but no bacteria was found in the culture. I vaguely remember something about an infarction that was noticed on the ct, but she was diagnosed with viral meningitis, and we we came out of coma after 1 week and was discharged after another. She seemed ok, though somehow a bit "off " irritable, and not as
  
  
• Kate K from Joliet IL (September 22, 2012, 02:32)
  
  Directed to Monica from June 7, 2012 Monica, I am a 23 year old female. I am 5'8 and I am of healthy weight since 5 months ago. 2 years ago I started suffering from a constant nausea. My nausea became accompanied by passing stool 15x times a day for 2 weeks straight. I then started noticing that I was no longer passing stool for weeks at a time, and that my stool was replaced by mucous that would exit from the anus this happened for an entire month. All food disgusted me. I would want to eat, but after 3 bites, I would feel nauseous and bloated. I lost 10 lbs in one week. I had a colonoscopy which returned normal, and a upper scope that returned back slightly abnormal with inflammation and scarring. I also had anal bleeding which followed a year later with abdominal pain. Ive had every blood test possible, fecal matter tests...everything. No cause of the bleeding or the nausea has been diagnosed. 5 months ago I went to see a new doctor. He spent two hours with me digesting every bit of info i faxed from my doctor and what we spoke of. He suggested seeing another gastrointestinal doctor, but wanted to try a few things first since I had been to the doctor 20x times in three months. During the visit I had been suffering from a terrible burning scarring feeling in my throat. The acid reflux I was diagnosed with had gotten so bad that the acidity was causing scarring to rise up my throat talking, eating and drinking hurt. My doctor prescribed me a prescription that simply stops the stomach from "convulsing" almost acting like an anti- seizure medication and helps the stomach to smooth its inner lining. It has worked so well with me. I also realize that when I am SO OVERLY NAUSEATED, I become depressed. I also get a itchy rash on my thigh area that spreads into the calves. This is something I will get an ALCAT test for to see if I may be allergic to something. This medication for my stomach has helped my stomach digest so much better and also helps keep my acid reflux at bay (it had gotten to a point where I had to carry a cup because I was salivating about a half a cup every 10 minutes due to the reflux. Please keep us updated on your husband. Tell him he should see a good massage therapist that works with neuromuscular disorders and such to help with his mobility and muscle pain and tension! Take care! Best of luck!
  
  
• Maryann (September 21, 2012, 23:41)
  
  Mystery Illness Leaves Florida Girl Unable to Walk, Talk For the girl in FL They should try the Real Medical Mystery Doctor in NY his name is DR. Bolte he has help alot of people..
  
  
• need help or going to die (September 21, 2012, 23:30)
  
  For years I've had a mystery ailment that doctors either refuse to take seriously or don't know what is, either way they haven't been at all helpful and i'm very poor (on social security and can't afford to keep going back when they aren't doing anything) the symptoms are that about an inch under the corner of my left jawbone, in my neck, where you might take a pulse at... there's a very swollen and hard and sore lump. for some reason (i feel that it cuts off blood supply to my brain) it makes me excrutiatingly tired ALL THE TIME. no matter how much or how little i sleep i am always totally exhuasted and feel very ill. some days i can't even get out of bed. at the same time i feel constantly sick to my stomach like i have to vomit and can't even eat a child's meal and i've consistently lost weight over the past 5 years. i really can't take this anymore, it's affected my quality of life to the point that i can't enjoy anything anymore and life isn't worth it :( please if you know what this is or are willing to help me in any way, email me at unadahmer at hotmail.com... (it wouldn't let me put that at symbol) this is my last hope, if this can't be taken care of then i don't want to suffer anymore and i'm going to be forced to take my own life.. i'm sorry :( thank you - michael trunk
  
  
• Mom of a now 17 year old (September 21, 2012, 23:28)
  
  Last Sept. 2011 my son started with itching and then pain in his fingertips, then it went to his feet and he got blurry vision. The Neurologist can't find anything other than a slow reaction between his brain and his hands. The MRI's have shown nothing. He even went blind for awhile, until an Ophthalmologist dilated his eyes for testing. My older daughter was diagnosed 2 years ago with Multiple Sclerosis and is now Progressive. The doctors cannot find out what is wrong with my son even though he has gone through numerous tests being shocked, etc. My son is now in a wheelchair and taking his Senior year in High School in Home Schooling with me writing for hims since he can't use his hands or feet from the pain. I have taken down your telephone number from above and will call on Monday. His Neurologist says he can't figure out what is wrong with him so if he can't go to college next year I won't be able to get insurance for him since there is no diagnosis he doesn't qualify for SSI even though he is disabled. I hope when I call you can help my son, I am so scared for him and his future he used to play the guitar and write music, he was in advanced Drama at school and his teacher hopes to still get him in this year, I am arguing with the District to get him in the one class. He wanted to go into the Marines before all this happened to pay for his College, but now they won't accept him. He is a very intelligent person and gets very high scores, his teachers all say he is the most polite young man they have ever met. I am very proud of him and all he has done even through the pain but no pills work, even the ones that block the pain receptors in the brain didn't work. I hope if his doctors do not find out this year what is wrong with him he will be out in the cold since he can't do anything. Please help him..Thank you very much..
  
  
• Liz (September 21, 2012, 22:39)
  
  Is there any ongoing research in Huntington's disease in the program?
  
  
• Jennifer (September 21, 2012, 22:37)
  
  My daughter is now 5 years old and seems to be in prefect health but that is not the case when she was 5.5 minths old she could not move from the waist down we have seen several doctors and no one could tell us what was wrong with her after a week in the hospital she was able to move her legs again it took her a while before she could sit up crawl and walk on her own we had pt and ot for many yeas as of right now she is still in pt and ot she still falls when she walks she can not go a whole day without falling several times she can not motor plan like she needs to and I am out of answers and the doctors are not doing anything to figure out what is going on they have done two or three cpks and is it elevated and no one knows why that is either I am very upset and do not know where to turn I have been asking to go to other hopsitals for months and nothing has happened I have been very patient but no matter how many questions and how many doctors we see the answer is still the same I don't know its hard not knowing if you will wake up and your child be takin from you because no one could figure out what is wrong I know doctors are not God but its hard not to hold them accountable for finding out is wrong with our childern and even our selves
  
  
• Rj (September 21, 2012, 21:01)
  
  Scared frustrated mother from nebraska Your son may be suffering from a disease known as (stills) Have son checked out by a rheumatologists, for a diagnosis.
  
  
• Anonymous (September 21, 2012, 19:38)
  
  Patient Brianna Skriver: check carefully everywhere for tick. All tests negative, tick paralysis?
  
  
• Bridget from Utah (September 21, 2012, 19:00)
  
  My son is 12 and has been suffering for a few years now. Unexplained pain in upper abdomen and lower abdomen. Numerous test: CT, MRI, scan for gallbladder, endoscopy, upper GI,blood test...everything normal. Missed the whole 6th grade because he was at home with such severe pain. So frustrating to have a non-functioning child. We tried countless medications, special diets, allergy free diets, but to no relief. Doctors write it off as anxiety but I know it is not. Also had severe insomnia, inflammation, low immune system and severe mood swings from the pain and the doctors just shrugging their shoulders at us. Doctor gave us meds to help him sleep but even the lortab doesn't help at all. He just wants to be a normal kid... It's so debilitating.
  
  
• Rhonda (September 21, 2012, 17:13)
  
  How about a diagnosis but no understanding or treatment? I lost all my body hair 2 years go after a traumatic experience. I was 38. It has never come back. They say it does not affect my health, however, I'm finding myself continuing to decline with a new autoimmune disease surfacing about once a year. There is a ton of speculation on diet and the garbage put in our food as well as industrialization. Even if not having hair is considered just a "cosmetic" problem, it is not. First, it is NOT normal and a signal to the body that something is wrong. Second, the social and pyschological effects are staggering. And THOSE are needs for a healthy indivdual in and of themselves. We've been basically ignored by the medical community. Quality of life is severely impacted. My life changed completely when this all began, and I've never been truly happy since. How about help for research for these types of things as well?
  
  
• WORRIED SISTER IN LAW (September 21, 2012, 16:11)
  
  About 2.5 years ago my brother in law went from being fine to suddenly having muscle spasms where his muscles were taking over his nerves. he couldnt walk lost his taste smell and his vision is decressing daily. than in oct of 2012 they did a surgery and installed a pump which fed an epidural to his spine it was a temporary fix and he was getting better than in march of 2011 he was back in the hospital with his spasims and several more times through out the year he was hospitilized for weeks at a time than in july he was back in the hospital because he fell and couldnt feel his legs below the knee they started over with all the tests and still can not figure out what is going on with him they are finally doing a genetics test to see if it could posibly be wilsons disease and with him still being paralyzed he us still having spasims he is 42 years old and this shouldnt be happening to him please help
  
  
• Scared Frustrated Mother from Nebraska (August 3, 2012, 16:01)
  
  My son is now 23 years old. A year ago he graduated from college and had a bright future ahead of him until he suddenly became violently ill. He was not able to keep anything in his stomach for more than 5 mins. and had extreme diarreha and constantly nauseated. His records have been sent you your institute in July by one set of doctors, and I pray that you will accept him in your program. We have been to numerous doctors and all the tests they have done come back normal, although they all say that they know something is wrong they just can't find it. He went from 165 lbs. to 121 lbs. in 8 months, he is 6 ft. tall so this is extremely under weight. He continues to lose strength but is trying very hard to not lose all the muscles in his body. This has been the hardest thing in my life to watch my very active son go down hill and there is nothing I can do to stop it. He want desperately to just get better and be able to be a productive adult.
  
  
• Monica (June 7, 2012, 12:35)
  
  My husband has been suffering from something for so long, but no one has been able to help him. He talks of taking his own life because he is so desperate to escape from the prison that his body has become. He is 48 years old, and every moment of every day has become a struggle. He had frequent sore throats as a child, but was never tested for allergies. In his early twenties he was so sick and having a lot of unexplained symptoms. He diagnosed himself with hypoglycemia after reading books and seeing that he had a lot of hypo. symptoms. His health improved after he started to follow the diet. He managed his health for years. He never felt "good", but it was better than before. He has had frequent bouts of nausea for years. Sometimes lasting for hours, but not usually throwing up. He has had gout, kidney stones, extremely itchy rashes, including what has been described as a "lupus" rash on his face. He got very sick again about six years ago, with alot of physical and neurological symptoms. After seeing a news story about mercury in tuna, he asked to be tested, and was diagnosed with mercury toxicity. I am afraid this may be contributing to this downward health spiral. Several years ago he started complaining more about the pain in his throat. He lost his voice for several weeks. He had constant pain. He was recommended to a gastro for acid reflux,which may be cause of pain in throat. Tried several diff. drugs for months. No relief. Reflux seemed to get worse. Walking the floor at night asking me to blow his head off. No relief. Endoscopy showed abnormal tissue in esoph. but it was benign. Last summer he tried eating only high ph foods to try to elimiate acid. Mostly greens and veggies. He lost 30 pounds,which he didn't need to lose. He was down to 149 pounds at 6'1, and getting sicker. Allergy tests showed wide range of food sensitivities, including wheat, dairy, eggs, most nuts, oats, yeast and about 20 others. He has eliminated these foods since Oct. Had 24hr ph test and monomotry in Dec, which appeared normal. Also a colonoscopy which was normal other than some diverticulitis. Reflux has improved after following food allegy diet, but pain in throat remains. Hurts to breathe, swallow and talk. Specialist at UCSF says vocal chords are atrophied and airway narrowing due to throat muscles trying to help force voice out. May be why it is hard to breathe, and hurts to breathe. Pain may be muscle pain. All muscles in his body are stiff and it is hard for him to move. Is it all connected? Why are vocal chords thin? He is a builder and has always been a hard worker. He has always worked a physical job, but is now in constant pain and has a hard time standing up, his muscles are so stiff. He does not have much muscle anymore,especially upper arms. Not sure if it is still from the weight loss or something else. Testosterone at 2.5 which is low end of normal. Is this part of the problem? He has managed to put 10 pounds back on but is still underweight. He has a hard time exercising at all anymore. Too stiff and painful.He moves like a 90 year old man. We have a 10,000 deductable on insurance and are struggling to pay all the bills. He says he is not going to anymore doctors for more tests that don't help him. We can't afford it. Whatever "this" is, it will either get better or worse, and he will just have to endure it or take himself out. We don't know where to turn anymore. His life is a nightmare that he can't wake up from. He is a good person who only wants his health back. He only has sadness, frustration, anger and pain left.He tries with everything in him to face each day, but it is becoming almost impossible. He can barely make it through the day physically and emotionally at work.It takes everything he has to fake his way through the day "out in the world". He is broken.He has been suffering for so long, and I feel so helpless.I think there may be something autoimmune happening. He is tired of being poked and telling his life story to different doctors and no one can tell him what is going on. He needs some answers. WE need some answers. He needs to feel alive again. Right now he is just scared, angry, sad and frustrated.He sees his life slipping away, watching other people live. We are both screaming for help. Someone, anyone, to please help us.
  
  
• UDP (June 5, 2012, 12:54)
  
  Those interested in participating in the NIH Undiagnosed Diseases Program can refer to the application procedure described in the Frequently Asked Questions section on this webpage. For more information, NIH patient recruitment specialists can be reached at (866) 444-8806, who can further describe the application process. Thank you.
  
  
• MARLENE GRANAROLI (May 28, 2012, 00:08)
  
  THREE YEARS AGO I STARTED DEVELOPING THE FOLLOWING SYMPTOMS: IMBALANCE,DIZZINESS, BOWEL IRRITATION,SLURRED SPEECH, ILLEGIBLE HANDWRITING,LEG PAIN, SWELLING IN FEET AND LEGS, PSORIASIS,FALLING, UNABLE TO TURN OVER IN BED EASILY AND INCONTINENCE. I HAVE SEEN 6 DOCTORS INCLUDING 2 NEUROLOGISTS. I HAVE HAD A NUMBER OF TESTS INCLUDING AN MRI OF MY BRAIN. I DO NOT HAVE A SPECIFIC DIAGNOSIS. I WAS PUT ON MANY DIETS IN 3 YEARS, I HAD CHELATION FOR A YEAR. I'M NOT ANY BETTER, IN FACT, I'M WORSE. I CAN'T WALK WITHOUT A WALKER, I CAN'T DRIVE OR WORK. I'VE ALMOST GIVEN UP HOPE TIL I SAW YOUR SPECIAL SHOW ON 60 MINUTES. CAN YOU HELP ME?
  
  
• Don Waterbury (May 23, 2012, 00:38)
  
  I have a friend with an undiagnosed disease. Is there a way she can contact your organization or another staff of physicians like those covered on 60 Minutes last Sunday? Thank you, Don
  
  
• Dee from MA (May 22, 2012, 21:26)
  
  I am so sad for all the comments that I have read here. My sister has not been suffering as long as some of you, but the pain is all too real for her. The best doctors in Boston have determined it is calcification of her legs. So, what does that mean? Since her diagnosis, we have not heard a word from one of her specialists, they have left her hanging and in pain with a biopsy that started out the size of a nickle and is now the diamiter of an orange and about an inch deep, full of infection that has to be dug out every week. We have fired them and now have local doctors who check on her regularly. Oxygen tests have been done on her legs and it has been determined that she is not getting any in the affected areas. They want to put her into a hyperbaric chamber pending insurance acceptance. Our fingers are crossed. The hemotologist here is convinced she has a rare blood disorder. Her white cell count is off the charts. We are so worried she could catch MRSA or worse, the flesh eating disorder. She can't sleep, the pain is constant and we don't know what to do for her. Please pray for her, as I will pray for all of you. Thank you.
  
  
• Karin (May 21, 2012, 01:49)
  
  What is the best way to get into contact with this group of doctors? I have been suffering for almost a decade with problems with my spine and muscles and I have yet to find a doctor that can give me a diagnosis. I am a twin and my brother has many medical problems, but I can not get answers for mine. The best answer I have gotten this far is that my spine is completely straight, from top to bottom, but no actual diagnosis. I need help. I just want to function normally or as close to normal as possible again.
  
  
• Martha from nevada (May 21, 2012, 00:08)
  
  Was glad to hear that someone out there realizes that stuff goes wrong with the human body and there is no asnwer. I have dealt with all the different guesses: MRIs, surgery, seizures and hyperammonia, stroke symptoms, terrible pain and loss of control, and paralized. Comes back and goes away and some days there is nothing and then.. back to hell. Not crazy and things keep deteriorating and I have been a lab rat, pin cushion and no answer, so I smile and pray that Drs. teams like yours develop more and more so the ones out here dealing with this life can get answers. God bless you all. Keep up the good work and maybe one day for me and all the other ones like me the answer will be there. Is good to know Im not alone...keep smiling praying and hoping.
  
  
• Margie (May 20, 2012, 19:45)
  
  I am a 44 year old woman that over the course of the last ten years have gone from being active to barely walking some days. Everyday I am in pain, best I can describe it is like it is under my skin. My hips and legs hurt to point I could scream. To top it off I have suffered headaches everyday for ten years, I have been to osteopathic, neurologist, eye, teeth, you name them probably been to them. Please please please help me.
  
  
• Coriane (March 21, 2012, 11:13)
  
  Kim from Delaware my best friends dad went through a VERY simular situation. Please find her on facebook and talk to her...Linda Poma...message her and say Coriane said to have talk about Vito with you. They are great people...your situations sounds so scary simular!
  
  
• Kim from Delaware (March 6, 2012, 23:43)
  
  Glad to see that the application process is back open. I've been so busy withhis care that I haven't had a chance to look to see if it was open for new cases. My husband has been sick for 4 years this May. We've been to some of the best hospitals on the East Coast and no one knows what he has. Just 45 days ago he stopped walking ... one day walking with a walker and the next he couldn't even stand. His short term memory is gone and needs to have everything done for him, except feed himself. I went from wife to 24 hour caregiver. I just hope we can find a diagnosis and possible treatment for him. He just turned 50 and it's so sad, he gets so frustrated as he can't even remember his birthday.
  
  
• Cori from Oklahoma (February 15, 2012, 15:10)
  
  We are awaiting a letter or call back from NIH. We are hoping they want to see our daughter Madison. She hasn't been herself for over a year now. she went from being a three year advanced student who was loved by everyone to being homebound. Somedays she barley has enough energy to chew her own food. we have seen so many different doctors and they all say different things! I worry she was chemically exposed to something that has damaged her nervous system and that nobody will ever figure it out! Please pray for her !
  
  
• Tricia from Hampton Virginia (January 3, 2012, 01:22)
  
  Looks like I'm going to be busy compiling medical workups from the past 5 yrs. for the summary to NIH. My doctors are good, knowledgeable people who have investigated each problem as it occurred and as my condition deteriorates they are waiting for the moment where it all comes together and they have the answer. I'm just hoping it won't be too late to correct the problem. I've learned that medicine is as much an art as a science. What a surprise! Little problems like my feet turning deep purple with excellent blood flow mystifies my doctors. Smelling strong bad odors and then having memory loss soon after is a little scary. Acute RUQ spasms have been checked out so often I glow in the dark but the full leg petechia after RUQ intense pain mystifies all my doctors... My all time favorite and most consistent is chills and shivering w/o fever, even when I am in a hot tub. It started full body a few years and now can be lower or upper body or right side or left side. What a hoot! If I didn't have a sense of humor I would have given up long ago. Newly on the scene are migraines, light sensitivity, visual disturbances, w and w/o headaches. Blood work, MRIs, CTs and a zillion tests are all normal. I'm not having heart problems, seizures, thyroid problems, brain tumors, or any cancers in the full body scans but something is slowing, intermittently, causing my body to lose it's ability to function normally. I have high hopes for the Undiagnosed Diseases Program. I've seen too many specialists and need a medical detective who can put all the pieces together. My very best wishes for the New Year 2012 for all who read this. Science is advancing and this project is hope for me and a lot of other people. Thank you.