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Finding a doctor
People with rare diseases sometimes have trouble finding a doctor. What was your experience?
Lumbar pain
- By FrustratedInNJ · New reply yesterday at 5:11 pm
- 3 replies
- Hi.... I'm a 46 year old female. My issue started in 2005. I started having back pain in the lumbar region. The first step was an x-ray which showed mild disc space narrowing at L-5 and S-1, consistent ...
Meningioma -
- By jmp · New reply November 5, 2009
- 2 replies
- My sister in Eastern Connecticut has been diagnosed with an meningioma and has been told by a local neurosurgeon that it needs to be removed soon. We are trying to find a neurosurgeon who specializes ...
OPLL (Ossification of the Posterior Longitudinal Ligament)
- By jh702 · New reply October 31, 2009
- 6 replies
- Help!!! I need to find a doctor that knows something about OPLL within the US. Has anyone been diagnosed with OPLL and have you found a doctor that knows about the rare spine disease in the west part ...
olliers
- By tuesday1965 · New reply October 28, 2009
- 5 replies
- I need to find a dr. that specializes in this condition. We have talked to surgeons and other medical staff but no one who can give us much help. My Grandson is six and isnow experiencing the broken bones ...
trigeminal neuropathy
- By Davidjoseph · New reply October 26, 2009
- 8 replies
- Can anyone out there really tell me the difference between neuropathy and neuralgia and some of the causes and is there any way to prove the cause. Really I need to find someone who really knows what ...
mixed cryoglobulinemia type 2
- By snoopycarmen · Posted October 22, 2009
- 0 replies
- Hi there. I'm a 63 year old female. I have Hep C 1a. I have had it for around 15 years. I have a high viral load and I'm very symptomatic. I also have this rare blood disorder assossiated with it. I need ...
Olliers Desease
- By sassy · New reply October 19, 2009
- 20 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 ...
Tarlov cysts - just diagnosed
- By AndiG · New reply October 15, 2009
- 5 replies
- I am looking for a doctor in Canada that treats Tarlov Cysts. I am a 36-year-old female who suffers from chronic neck and back pain. My neck and lower back were fractured 18 years ago in a motor vehicle ...
Larry Khoo, MD
- By tobim · New reply October 3, 2009
- 11 replies
- Has anyone seen this NS for a Tarlov Cyst? He is at UCLA Santa Monica and I am trying to reach his surgery patients, if any on this site ...
Fibromyalgia and Adderral
- By blessed375 · New reply September 16, 2009
- 11 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 ...
madelungs deformity
- By las03 · New reply August 25, 2009
- 18 replies
- trying to find a doctor that knows about this condition. I just keep getting steriod shots into the wrist for pain. What else is there for help? Lori ...
Parvo B19
- By tday · New reply August 23, 2009
- 3 replies
- I live in NC and have being having flu-like symptoms, fever, joint pain and swelling off and on for a year. I was diagnosed with Parvo in April and underwent 5 IVIG treatments. I initially noted several ...
Multiple Pterygium Syndrome or Escobar
- By nanogirl · Posted August 19, 2009
- 0 replies
- I am 29 years old living in Utah and I cannot find a doctor who knows anything about Multiple Pterygium Syndrome for adults. All the doctors I know treat children. If anyone knows of a doctor please let ...
tarlov cyst...help! what do I do?
- By jac1371 · New reply July 28, 2009
- 12 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 ...
meningiomas
- By Apple · New reply July 21, 2009
- 14 replies
- Want to know more about meningiomas, and share knowledge / discuss with professionals / patients and their families ...
SARCOIDOSIS
- By herman_perez · New reply July 20, 2009
- 2 replies
- I BENN TO SEVERAL DOCTORS , LOCK LIKE NO ONE NOW WHAT IS SARCOIDOSIS ...
Diagnosis, Management & Treatment of Progressive Neurological Disease
- By Kim · Posted June 30, 2009
- 0 replies
- National Tay-Sachs & Allied Diseases Association, Inc (NTSAD) and Brigham & Women’s Hospital are pleased to offer a CME Conference, Diagnosis, Management & Treatment of Progressive Neurological Disease ...
Serpiginous Choroiditis
- By KevinG · New reply June 20, 2009
- 23 replies
- Any one know of a good doctor in or around Vancouver BC Canada ...
Suggestions for getting a diagnosis
- By fmdinfo · New reply June 17, 2009
- 9 replies
- So many of the people I speak with who have FMD can't find a doctor to treat them. I recommend that they contact a major teaching hospital or private medical institution. I think the hardest part is figuring ...
Treatments for Stiff Person Syndrome
- By ci_tech · New reply June 12, 2009
- 2 replies
- Please forgive me as the topic is misleading. The intent of my discussion is to glean what appears to be many different treatment avenues for Stiff Person Syndrome. Personally, I have been on almost every ...
