Active discussions
- By chowmein2 · New reply 1:16 am
- In How my disease has changed my life · 12 replies
- Hi. Does anyone out there have cerebral vasculitis? My doctor won't refine the name (ie: CNS) because he feels the biopsy/angiagram is too risky health-wise. I am being treated with aspirin and Niacin ...
- By johnjohn · New reply 1:13 am
- In Finding emotional support · 3 replies
- hi, i have a 6 and a half year old little girl that has being diagnoised with cyclic vomiting syndrome about a year ago, the scary thing about this horrible disease is that my little girl vomits in her ...
- By ILOVEMYGRANDKIDS · New reply 12:10 am
- In How my disease has changed my life · 1 reply
- my dauthder has olliers disease,when she was born she was fine she looked fine she was a beautiful baby, she was born in 1977 . when it was time for her to star walking, she would sit down on the floor ...
- By Tinman · New reply 12:06 am
- In Getting a diagnosis · 11 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 ...
- By Lynn2 · New reply yesterday at 10:23 pm
- In Getting a diagnosis · 593 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 ...
- By Eamonn · New reply yesterday at 1:25 pm
- In Finding a doctor · 11 replies
- I'm working with a lady in the UK who has Proteus Syndrome -at least she presumes she does following a diagnosis from a specialist. However, everything gets confusing when you try to pin other medical ...
- By Djkmom · New reply yesterday at 10:28 am
- In How my disease has changed my life · 3 replies
- I have to practically live in a bubble. When I get sick, I get REAL SICK! I was diagnosed almost 2 years ago... I would like to talk to people that are going through the same thing that I am. From what ...
- By camae · Posted January 7, 2009
- In Medicare, medicaid and medical insurance · 0 replies
- My son Mik has been very ill with HSP since Oct 2006. Since he has no Insurance he relies on a public low-income clinic in out city. He is awaiting notification from SS on a hearing in front of a Judge ...
- By screamer · Posted January 7, 2009
- In Finding emotional support · 0 replies
- This is a very cool device that has been around a long time. It is called a proteus light sound modulator and it has glasses that flash llights in a certain pattern while earphones play soothing tones ...
- By linker3000 · New reply January 7, 2009
- In Getting a diagnosis · 5 replies
- Hello everyone, This may well NOT be CMTC related, but I'll only be able to get feedback, one way or the other, by asking... My 8 year old son has CMTC, with the distinctive markings over part of his ...
- By kristin26 · New reply January 7, 2009
- In Getting a diagnosis · 25 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 ...
- By katieleigh · Posted January 6, 2009
- In Finding a doctor · 0 replies
- Hello, my name is Katie I am 26 years old and a mother of two. I have been suffering from elevated CPK and muscle weekness and fatigue/spaming for 18 mths. I went that long without a diagnosis until today ...
- By abeachinflorida · New reply January 6, 2009
- In Finding emotional support · 1 reply
- I'd also like to know if there is anyone reading this that has also been diagnosed with AION. It seems that there are only between 8,000 and 10,000 cases reported annually each year, so not alot of scientific ...
- By suszannah · New reply January 5, 2009
- In Getting a diagnosis · 2 replies
- Hello all, i would welcome any advice or help on this.... In September 08 i got out of bath face really burned on right cheek, after a few hours it settled on numbness to top teeth, bottom teeth, with ...
- By KerryEngle · New reply January 5, 2009
- In Finding a doctor · 1 reply
- My Mother came all the way from California in 1996, to live with me in Pennsylvania. Due to horrific pain from Trigeminal Neuralgia she was unable to continue working. She has tried everything that we ...
- By Maa · Posted January 5, 2009
- In Getting a diagnosis · 0 replies
- We got a two and a half year old daughter who was born very disable with lots of seizures every day. Doctor has done all the tests which came normal apart from her biopsy. Now the doctors in uk think ...
- By snuggles · New reply January 5, 2009
- In Getting a diagnosis · 2 replies
- 12 years ago my son was born still due to a cord accident but as a parent I needed to know more.. So I had an autopsy done and when the results came back one of the diagnosis was Goldenhar Syndrome the ...
- By Margaret_Clark · New reply January 4, 2009
- In How my disease has changed my life · 16 replies
- I live in the UK and was diagnosed with cerebral vasculitis 10 years ago after suffering from violent headaches, mini strokes and intense pain in my toes and fingers . I had a lumbar puncture and MRI ...
