With rare diseases, this can be a lengthy and frustrating process. Was it for you?
- By bertolas · October 8, 2008
- 0 replies
- ANY HELP ON THIS CHILD WOULD BE GREATLY APPRECIATED THEY ARE GOOD FRIENDS AND AND THEY ARE BESIDE THEMSELVES TRYING TO FIND OUT WHAT THIS KID HAS. Hi Deb, I got as much info i could on Britney She's 11 ...
- By Vivien · October 5, 2008
- 2 replies
- Hi, This is my first posting. I live in Ireland and am 46 years of age and have just been diagnosed with Spina Bifida Occulta, Tarlov cyst on s1, duplex collection system in my left kidney which is also ...
- By Tatina · October 3, 2008
- 0 replies
- my 80 yr old mother was misdiagnosed for 2 months with a stroke.Her weak right leg, arm and slurred speak got worse... another neuro said she didn't have stroke. Admitted to Duke and had all kinds of ...
- By Cali_mommy · September 24, 2008
- 0 replies
- I am looking to connect with anyone who has a child with this rare genetic syndrome. My son is waiting to be tested - just waiting approval for a grant from the only lab that tests for this syndrome ...
- By karen66 · September 23, 2008
- 2 replies
- My father was diagnosed with Wegenes Granulomatosis in 1981 and passed away in 1983. My daughter started showing a variety of systems and after two years was finally diagnosed with Orofacial granulomatosis ...
- By wellimnot · September 22, 2008
- 0 replies
- I would appreciate any info re: parvovirus. I was told that my lab test was positive but reflects an old exposure. I really can't find any infothat makes sense ...
- By tjsmile · September 22, 2008
- 0 replies
- Hello This topic is very important to me, because my son has this deletion! As far as I know he is rare in being the only one with 14.1q to 15q missing so there is not to much doctors do for him. There ...
- By Joby · September 17, 2008
- 7 replies
- Hi I am a 28 year old woman who has had TRAPS for 8 years. Is there any women who have any information on pregnancy/conception issues and suffers from FMF/TRAPS/periodic fevers ...
- By pita · September 9, 2008
- 9 replies
- I have been back to my nuero whom has read the reports from where I was attmitted to Emory Medical Center and apparently I'm making all my symtoms up. I dont know why on earth anyone would want to be ...
- By tdhssp · September 3, 2008
- 0 replies
- Hello, my name is Velvet and my child was born in 1993 with a rare chromosome duplication known solely as tetrasomy 18p. NORD was imperative in helping me link to other individuals with similar diagnosis ...
- By shellymoon · August 27, 2008
- 0 replies
- I as you all know went into have a biopsy early this morning but when the nurse called later she said everthing was ok, but didn't give any details and I'm still feeling bad plus all other pain as well ...
- By pita · August 25, 2008
- 4 replies
- I need some Help!!!! Been Tested many times EEG< EMG< MRI ...
- By rabsab57 · August 23, 2008
- 3 replies
- I have had RLS for many years now I am have sizures and have been told that I now have myoclus i also have high colestrol and arthritis and I have a double by-pass in the pass 5 years ...
- By Althea42 · August 19, 2008
- 1 reply
- 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 ...
- By wonderingapril · August 17, 2008
- 2 replies
- My neurologist thinks I might have CIDP. We have ruled out MS. We have tried to get a Nerve Study done twice now and I haven't been able to complete either one. Does anyone know if there is any other ...
- By hukleberrie · August 14, 2008
- 20 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 ...
- By larkspur3 · August 14, 2008
- 1 reply
- Hi, Thought I would mention my symptoms to the experts, because for the last ten years I have not received a dx. I get Hives, but not regular hives angioedema hives, my eyes start first, then my face ...
- By joyceg98 · August 12, 2008
- 0 replies
- Joyce Graff of the Powerful Patient, a radio show on webtalkradio.net, recently interviewed Peter Saltonstall, the new President of NORD. We talked about Peter's work on patient safety in hospitals, and ...
- By Blbd0814 · August 10, 2008
- 0 replies
- Kaposiform hemangioendothelioma (KHE) is an uncommon vascular tumor that can be present at birth or appear in early infancy. Compared with common hemangiomas, KHE occurs less frequently in the head and ...
- By imconcerned · August 8, 2008
- 0 replies
- I saw a program on Discovery Health concerning this symptom. I don't remember what the final diagnosis was. I have been searching around and having no luck at all. I don't know how to get on to be able ...
