People with rare diseases sometimes have trouble finding a doctor. What was your experience?
- By mishap · New reply November 18, 2008
- 2 replies
- I got hurt at work and my symptoms got worse. Didn't know I even had this till my Dr. took a MRI after my fall. My comp case was going down the tubes because their doctor said he could find nothing to ...
- By sissybangs · Posted November 17, 2008
- 0 replies
- My 16 year old son was recently diagnosed with Steatocystoma Multiplex Suppurative. He has an atypical disease that is behaving atypically. Lucky us! The majority of his cysts have been in the perianal ...
- By rasvak · New reply November 14, 2008
- 4 replies
- My two day old grandson was born with diphallia, which only occurs in 1 in 5 million births. He also has imperforate anus, horshoe kindney and severe scoliosis. Looking for any info I can find ...
- By KarenCox · New reply November 6, 2008
- 9 replies
- My nephew was recently diagnosed with ECD and is receiving treatment at Mayo in Rochester, MN. Does anyone know of a better place ...
- By Cyndi1 · New reply November 4, 2008
- 2 replies
- We have seen and/or contacted doctors up and down the Northeast coast. It is frustrating that not only can we not find a doctor who has seen a case of Leri Pleonosteosis, we only found one doctor who ...
- By Kberri310 · New reply October 30, 2008
- 3 replies
- I'm looking for a pediatric vascular Neurosurgeon who is experienced with Von Hipple-Lindau. My 12 yr old has a brain tumor and multipal spinal cord hemangioblastomas. I live in New England and Boston ...
- By sassy · New reply October 24, 2008
- 3 replies
- My daughter was just diagnosed with Ollier's. She also has Madelungs Wrist Deformity. She's in a lot of pain, and has had two surgeries already. I feel confident that our doctor here is a great doctor ...
- By blessed375 · New reply October 21, 2008
- 8 replies
- The extreme fatigue I have and brain fog has gotten out of control. Went as far as to have a sleep study which basically stated I did not stay in R.E.M sleep for as long as most people. I have had a fibro ...
- By lebcurly · New reply October 21, 2008
- 1 reply
- My daughter has had her bunions on both feet done 3 years ago. One foot has healed and the other has not. There remains a hole in her foot from which a clear liquid leaks out. Has anyone ever heard of ...
- By dizzybee · New reply October 16, 2008
- 2 replies
- Hello all, new to this site. I am a 45 yo white female, my mother was almost 35 when I was born and she smoked throughout her pregnancy. My brother had mumps and german measles, which my mother exposed ...
- 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 ...
- 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 ...
- 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 ...
- 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 ...
- By jac1371 · New reply October 1, 2008
- 10 replies
- Hi, I'm 36 years old, have two wonderful boys, ages 8 and 13... I have been in pain for 9 years now. Everytime I went to a doctor they would laugh at me and say it was all in my head. I even had an MRI ...
- 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 ...
- 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 ...
- 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 ...
- 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 ...
- 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 ...
