Comments:

• 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.