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Getting a diagnosis
With rare diseases, this can be a lengthy and frustrating process. Was it for you?
It's Cost Me My Job, Insurance, Part Of My Sanity, And Still Undiagnosed
- By lf325 · New reply 2:42 pm
- 25 replies
- I have had a chronic condition for over a year and am still undiagnosed. My symptoms include fatigue, nausea, occasional vomiting, headaches, changes in bowel, reoccurring flu, and a constant thirst ...
Isaac's syndrome
- By Lynn2 · New reply yesterday at 10:41 pm
- 894 replies
- Does anyone have Isaac's syndrome or have a relative or friend who does? Also, if you are just knowledgeable about this disease... Thanks, Lynn ...
Beals Syndrome (CCA) in a Marfan's patient?
- By Althea42 · New reply July 1, 2009
- 18 replies
- Hello all, So, I'm one of those 'lucky' people who has known about my Marfan Syndrome since birth because it runs in my family and goes back several generations. I try to stay on top of what's happening ...
back & chest pain
- By Binu · Posted July 1, 2009
- 0 replies
- About 3 months back, I had a severe pain which started in the back (middle) and spread to the chest. The pain was excruciating after I slept for about 6 hours and it was almost difficult to breathe as ...
A Medical Egnima
- By Tinman · New reply June 29, 2009
- 17 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 ...
CCA life expectancy
- By Ekaterina · Posted June 29, 2009
- 0 replies
- Hello! My name is Kate, i am 28 years old. I have a problems of information because i am from Russia were genetics is an exclusive specialization. I want to know about genetic differences between Marfan ...
Familial Mediterranean Fever Disease
- By kristin26 · New reply June 28, 2009
- 33 replies
- Is there any one that has this Disease? I Just found out i have it on june 17th and its very rare! I feel so alone. I hope i can find someone who has the same Disease so i understand what im going through ...
Tarlov Surgery Outcomes.
- By ColleenInCanada · New reply June 27, 2009
- 3 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 ...
Help!
- By augie5 · New reply June 27, 2009
- 4 replies
- Four years ago I started having horrible earaches. Several months later I had some dental work done, came back from the dentist and my heart started palpitating, throwing PVC's every second or third beat ...
"You Can't Have That or You'd Be Dead By Now!"
- By caringcounterparts · New reply June 27, 2009
- 66 replies
- For a little bit of fun (I figured we could use it) I thought I'd start a collection of ridiculous comments from doctors that we've all received as we tried to get a diagnosis. I'll kick off the list ...
PFAPA
- By danitorgersen · New reply June 25, 2009
- 4 replies
- does anyone know any information about the PFAPA (periodic fever, aphthous stomatitis, pharyngitis, cervical adenitis)?? Or is anyone dealing with this syndrom with one of there kids?? PLEASE HELP ...
Undiagnosed - Prop. Legislation: H.R.:2538 .. Undiagnosed Diseases Registry
- By turtle102301 · New reply June 23, 2009
- 6 replies
- My Name Is Heather Long and my son died at the age of 5 from an undiagnosed disease. On May 21, Congressman Carter proposed legislation on my request, that if passed, would create a National Undiagnosed ...
Porphyria of some variety
- By winnie · New reply June 23, 2009
- 1 reply
- I have been ill for about three months, but haven't received a definitive diagnosis. My treatment is limited by a rural setting and doctors who haven't seen or treated my disorder. I have read many medical ...
mastocytosis
- By Doobie628 · New reply June 18, 2009
- 4 replies
- I have been going to doctors for over a year now.. the latest mentioned a diagnosis of Mastocytosis.. I am wondering if anyone knows if edema of the extremities is part of that disease....any help is ...
10 year old with extreme case of HSP
- By Hjohn73 · New reply June 18, 2009
- 9 replies
- This is long, but this will help everyone take seriously henoch schonlein purpura. My daughter was diagnosed with HSP in early May. It took 4 trips to 3 different emergency rooms for her to be diagnosed ...
Hope in Weeble Wobbles
- By 2plus1not3 · Posted June 17, 2009
- 0 replies
- I just recently went to see my ortho surgeon as I have been sidelined lately with 4 herniated discs. Though it is an unofficial diagnosis he says I have weeble wobble syndrome. No matter what injury or ...
Tarlov disease
- By ferny · New reply June 14, 2009
- 44 replies
- I would like to hear from anyone who has Tarlov disease. I have had this now for more than a year. I have been hospitalised 3 times and have been told there is nothing wrong with me and that I sleep too ...
Cramp Fasciculation Syndrome
- By Griff · New reply June 14, 2009
- 68 replies
- For two years I have been having electric shocks in my arms and hands, muscle twitches all over, and excruciating stabbing pains in my thighs and calves. This week I was finally diagnosed with Cramp Fasciculation ...
Help with symptoms
- By Tinybird · New reply June 10, 2009
- 10 replies
- I don't know if anyone has had similar problems, but my brother is now showing signs of an unknown allergic reaction. His lips, eyes, and extremities are swelling. He has treated himself with benidryl ...
CMTC USA meeting 18th July 2009
- By LexVanDerHeijden · New reply June 10, 2009
- 74 replies
- On Saturday afternoon the 18th of July 2009 the CMTC USA meeting will be organized again in Washington DC. The meeting will be organized by Lex van der Heijden, president CMTC, and one of the medical ...
