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cerebral vasculitis

chowmein2
  • By chowmein2 · New reply 1:16 am
  • Discussion 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 ...

cyclic vomiting syndrome

johnjohn
  • By johnjohn · New reply 1:13 am
  • Discussion 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 ...

ollier's disease

ILOVEMYGRANDKIDS
  • By ILOVEMYGRANDKIDS · New reply 12:10 am
  • Discussion 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 ...

A Medical Egnima

Tinman
  • By Tinman · New reply 12:06 am
  • Discussion 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 ...

Isaac's syndrome

Lynn2
  • By Lynn2 · New reply yesterday at 10:23 pm
  • Discussion 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 ...

NEW FRIENDS THANK YOU

mandyblue
  • By mandyblue · New reply yesterday at 9:07 pm
  • Journal · 6 replies
  • Being new to these groups, I want to thank everyone of you who accepted being my friend. I want to talk to each and everyone one of you. It may take me a couple of days as I am freshly out of the hospital ...

invitation to join internaf

data2
  • By data2 · Posted yesterday at 8:06 pm
  • Journal · 0 replies
  • Hi, My name is Michel Beaudet, I'm 47, have FA and live in Quebec, Canada. I'm sending this message to invite people to join a list for those with ataxia. The list is called Internaf and there's also ...

more dumb doctor stories

dizzybee
  • By dizzybee · New reply yesterday at 3:20 pm
  • Journal · 9 replies
  • I think I had a heart attack, pretty dang sure. Chest pain, numbness in left arm and left side of face. Had hubby drive me to fire station (around the corner) they were getting bps of 136/114 132/112 ...

proteus Syndrome

Eamonn
  • By Eamonn · New reply yesterday at 1:25 pm
  • Discussion 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 ...

Dwarfism

liebchen1
  • By liebchen1 · New reply yesterday at 1:16 pm
  • Journal · 1 reply
  • I am wanting to communicate with other parents who are raising a child with dwarfism. My son is 2 years old and a joy to us his parents. I welcome the chance to share stories, struggles, and successes ...

All of Me, Nothing of Me

blueriver
  • By blueriver · New reply yesterday at 11:48 am
  • Journal · 15 replies
  • I am an extrovert and love people, yet I shy away and cave myself in. I live in constant sorrow yet, I enjoy my good sense of humor and love to laugh with others. I hardly eat, yet I am well over weight ...

Systemic Mastocytosis and other Autoimmune Diseases

Djkmom
  • By Djkmom · New reply yesterday at 10:28 am
  • Discussion 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 ...

V.I.D.S and mercury poisoning

Ragna
  • By Ragna · New reply yesterday at 6:16 am
  • Journal · 4 replies
  • my daughter has a mercury poisoning and vaccination induced disease syndrome,has anyone in here had the same diagnoses ...

Fahr's Disease

Macbeth
  • By Macbeth · New reply January 7, 2009
  • Journal · 15 replies
  • I have been recently diagnosed with Fahr's (2 weeks) ago. I'm from Canada. Not too much is known about it. I'm really upset about the whole thing. If I could talk to anyone with the disease and see if ...

Jake/ NG tube gone

shan789
  • By shan789 · New reply January 7, 2009
  • Journal · 17 replies
  • Finally The General(NG tube) is gone. The GI pulled it today, she also said if his surgeon agrees he could return to school after winter break. He is one happy kid. He is still onlt eating 900 calories ...

Ensuring care for HSP

camae
  • By camae · Posted January 7, 2009
  • Discussion 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 ...

Light sound modulator for relaxation

screamer
  • By screamer · Posted January 7, 2009
  • Discussion 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 ...

CMTC - Pain in foot

linker3000
  • By linker3000 · New reply January 7, 2009
  • Discussion 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 ...

Isaacs Syndrome

screamer
  • By screamer · Posted January 7, 2009
  • Journal · 0 replies
  • Well I am hearing from the people on this site that it sounds like I have Isaacs syndrome. After looking through the threads I have to agree it fits. I just have to get a diagnosis again. first fibromyalgia ...

Familial Mediterranean Fever Disease

kristin26
  • By kristin26 · New reply January 7, 2009
  • Discussion 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 ...

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The NORD Rare Disease Support Community connects patients, families, friends and caregivers for support and inspiration. The NORD Rare Disease Support Community is sponsored by the National Organization for Rare Disorders in partnership with Inspire.