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Getting a diagnosis
With rare diseases, this can be a lengthy and frustrating process. Was it for you?
Head to toe body twitching w/other symptoms
- By Lynn2 · New reply November 9, 2009
- 29 replies
- I am putting this out here b/c I am at a crossroads. I need to find a doctor or a facility that is knowledgeable in this area. I have seen lots of docs with no diagnosis. Here are the basics: -Head to ...
RND
- By softballgirl · Posted November 8, 2009
- 0 replies
- I just got diagnosed with rnd and I've had pain since I was 5 years old and now i have to wait to get into the institute has anyone been there? I'm nervous and I'd like to know what It's like there ...
Tarlov Surgery Outcomes.
- By ColleenInCanada · New reply November 6, 2009
- 12 replies
- I have just been diagnosed with a 1.5cm Tarlov cyst in my S1-2 region. It has been causing sciatic type pain for the past 3 yrs. I am waiting for an appointment with a neurosurgeon - which will likely ...
Neonatal Alloimmune Thrombocytopenia
- By YTP · New reply November 4, 2009
- 4 replies
- Has anyone had a diagnosis for their newborn baby called Neonatal Alloimmune Thrombocytopenia (NAIT) or fetomaternal alloimmune thrombocytopoenia (FMAIT)? Fetomaternal alloimmune thrombocytopenia occurs ...
Adrenalectomy, Hospital Meds
- By GingerPeaches · New reply November 4, 2009
- 1 reply
- When in the hospital for an adrenalectomy, who is the overall person who coordinates and accesses your medication? Should you bring all the medication you are presently taking to the hospital? During ...
diverticulosis attack???anyone???
- By mph · New reply November 3, 2009
- 8 replies
- anyone get this? Seems to be related ...
I haven't been diagnosed with anything!
- By Volk · New reply November 3, 2009
- 6 replies
- It all started when I was about 10, I passed out in school and my mother took me to the pediatrician who told her "it was my hormones" and she should just make sure I had breakfast in the morning... After ...
Spect Scans and unexpected Kidney
- By dianes123 · New reply November 2, 2009
- 1 reply
- Hello all, I was wondering if any body could help me with a question I have regarding a spect scan I had back in Sept. of 2008. Now this spect scan was to be for my back, legs, and neck and came out to ...
Recurring fever in children
- By ljanewyork · New reply October 31, 2009
- 5 replies
- My son has had recurring fever (102-103 for 4 or 5 days) since he was 8 months old and it happened every 29-30 days for the last 4 years!!!! he has NO OTHER SYMPTOMS!!!! nothing. he is almost 5 and stil ...
Pitt Hopkins Syndrome
- By Shark · New reply October 30, 2009
- 23 replies
- My 22 year old daughter has recently been in hospital for diagnostic testing regarding her uncontolled epilepsy. The doctor has suggested Pitt Hopkins. He has also said that there is no definite blood ...
4year old daughter and her Horseshoe kidney
- By pie830s · New reply October 29, 2009
- 5 replies
- My daughter has a Horseshoe Kidney and has had to many infection. She has been complaining of pain inher back,side and hurting when she pee pee. she took a tip test and they said she didn't have a UTI ...
Match your Symptoms
- By orthe · New reply October 29, 2009
- 10 replies
- For those who have an undiagnosed illness, post your symptoms to meet others who suffer from the same symptoms or to get other people's opinion on what it could be ...
Fahr's Disease
- By Wilma · New reply October 29, 2009
- 5 replies
- Does anyone know anything about Fahr's Disease, and what would be the course of treatment for it. From all I have read there is no cure, but that it can be treated. Can anyone give me some information ...
A Medical Egnima
- By Tinman · New reply October 29, 2009
- 19 replies
- Hello I am looking for others with Stiff Person's Syndrome? I can't seem to connect with anything active on this topic. Is anyone out there ...
sICKLE CELL TRAIT IN MY PREEMIE BABY
- By denisehenshaw · New reply October 28, 2009
- 2 replies
- Just found out my peemie who has been in the NICU for a month now has the "sickle cell trait" can anyone please help me with what this means and if anyone out there has it to help me deal with this ...
Ehlers-Danlos Syndrome (EDS)??
- By hukleberrie · New reply October 27, 2009
- 62 replies
- Hello, all. I have been having some health issues lately. I have had things all my life, but lately it's been a little out of control. I became very sick over a year ago and lost 50 lbs. At this time ...
Hypotonia
- By Aviva · New reply October 27, 2009
- 19 replies
- Hi My Aviva is 4 wks old and is diagnosed with a generalized hypotonia.. with no real diagnoses...they took all genetic testings( Karyo type aso) n everything came back good...she's extremely floppy especially ...
Tarlov cysts
- By Tam · New reply October 27, 2009
- 31 replies
- I have had back pain, leg pain, and headaches. If I walk for more than 15 minutes I'm in pain, same with sitting. I wake up during the night 2 to 4 times because of the pain. This has been happening now ...
leukodystrophy with vanishing white matter disease
- By eggabeth · New reply October 26, 2009
- 4 replies
- My daughter is 5 years olkd and was recently diagnosed with leukodystrophy with vanishing white matter disease I am looking for someone who has had this disease or knows of some one. I dont know much ...
22 month old undiagnosed and needs help
- By puddypie007 · New reply October 26, 2009
- 10 replies
- Hi, I'm new here. I am posting this here and on every other undiagnosed health forum I can find. If you have a recommendation for a forum, please send it to me. My sister's son has been suffering since ...
