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Finding a doctor
People with rare diseases sometimes have trouble finding a doctor. What was your experience?
CMTC - finding a doctor
- By LexVanDerHeijden · New reply October 16, 2008
- 3 replies
- CMTC is a rare skin disease with complications which vary from cosmetical up to and including death. Since 22 January 1997 a not-for-profit patient support organisation, based in the Netherlands, is active ...
Ramsey Hunt Syndrom
- By dhulshizer · New reply October 7, 2008
- 1 reply
- The conditions for normal Ramsey Hunt do not apply in my case. After a bout with pneumonia I was left with this condition. I visited nine (9) physicians before anyone could tell me what it was. The main ...
Autoimmune progesterone dermatitis
- By Donna1959 · Posted October 7, 2008
- 0 replies
- My 24 year old daughter, who lives in Atlanta, is looking for a Dr. who has knowledge concerning this condition. Her symptoms, which range from rashes to very painful swelling of different areas at different ...
UndiagnosedCondition
- By undiagnosedandscared · New reply October 1, 2008
- 10 replies
- HI I LIVE IN TEXAS. HERES MY STORY. Sometime in November, One day I went out with my boyfriend, my sister and her boyfriend. At night we went back to my sisters’ house. It was raining and I was driving ...
serpiginious
- By nikky · New reply September 29, 2008
- 3 replies
- I am 32 years old and diagnosed with serpiginous chor.(Rare eye disease) I am looking for others with this disease. I would love to know what current treatments you are receiving and the doctors that ...
isaacs syndrome
- By littledragonfly · Posted September 22, 2008
- 0 replies
- i need find a doctor that know about that ill in any state of USA, here, Peru, nobody knows what do with me.Also i have Hashimoto syndrome ...
Steroid resistant minimal change nephrotic syndrome in toddler
- By jmcpowlen · New reply September 21, 2008
- 1 reply
- My 2 year old nephew is in kidney failure. He has not responded to any drugs and he continues to get worse. Because he is not responding to the usual drugs, his doctor thinks he may have "congenital nephropathy ...
Need a Doctor in Louisiana
- By chiilin · New reply September 21, 2008
- 4 replies
- Hi, I'm in Louisiana, and having to find a new doctor because of insurances changes. My present primary care doc is wonderful. Even though he doesn't know everything about everything, he is very open ...
Stevens-Johnson help
- By lrober3 · Posted August 29, 2008
- 0 replies
- I'm 28 years old. I need help finding a doctor to treat genital lesions resulting from SJS. I'm in pain daily. I'm in the Baton Rouge/New Orleans area and am willing to travel ...
3MCC
- By 3mcc · New reply June 13, 2008
- 4 replies
- I am looking for a docor who will be able to accomodate my son and not use him as some lab rat. Currently his tx is not working. Are there any other parents out there who have a child with 3MCC? Am I ...
dr. edward w. song in arizona
- By dorsey · Posted May 29, 2008
- 0 replies
- has anyone had any experiences with dr. edward w. song od arizona ...
Anyone with Sydenham's Chorea?
- By gcvmom · Posted May 20, 2008
- 0 replies
- My 11yo son was dx'd with Sydenham's in March '08. His case is atypical in that the tremor has persisted since age 4, and the mood problems associated with this disorder began one year ago, or 16 months ...
Adult Langerhans Cell Histiocytosis + autoimnume
- By mdavisworth · New reply February 9, 2008
- 4 replies
- I Live near Huntington Wv & there are no doctors in area for LCH, also docs are not sure if additional symptoms are part of LCH or part of an additional autoimmune disorder. Was diagnosed with MS in 1991 ...
Gary Holland M.D. at Jules Stein Eye Inst., UCLA
- By Charlie2 · Posted February 2, 2008
- 0 replies
- I have been diagnosed with choroiditis serpiginous. I see Gary Holland M.D. at Jules Stein Eye Institute at UCLA. He is top-notch and worth going to. He is 100% dedicated to his patients. I have had the ...
AVM-arteriovenous fistula(help please)
- By Reluu · Posted November 21, 2007
- 0 replies
- Heloo.Este cineva din Romania care ma poate ajuta sa gasesc un doctor care sa ma poata trata de aceasta boala.Am nevoie de cineva prin care sa comunic eu nestiind limba engleza.Am fost diagnosticat cu ...
cyclic vomiting syndrome
- By michelekellner · New reply October 14, 2007
- 3 replies
- My son, 21 yrs, suffers from CVS; his episodes began 39 months ago with episodes coming about every 2 months and lasting 4 days overall. We have seen Dr. David Fleisher at U of Mo. and most recently Dr ...
Madelung's Disease
- By swest · New reply October 13, 2007
- 4 replies
- I am still looking for a DR. Actually, I've been to so many DR'S but everyone says there is nothing they can do. It took me 5 years to get diagnosed with madelung's bone deformity. I would like to know ...
bilateral mandibular coronoid hyperplasia
- By diane3 · Posted September 12, 2007
- 0 replies
- Need help finding doctors that have treated young children, age 3 for this problem. This is related to the nevoid basal cell carcinoma syndrome, sometimes referred to by Gorlins syndrome. This is a very ...
DR. familiar with CFC Syndrome
- By kirsten1 · Posted September 10, 2007
- 0 replies
- Would prefer to find one in the Ok,Ks or Mo area that can help thanks ...
FOURNIERS GANGRENE
- By LHILL3000 · Posted August 29, 2007
- 0 replies
- I need a doctor who has done fourniers gangrene cases in the newark new jersey area ...
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