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Finding a doctor
People with rare diseases sometimes have trouble finding a doctor. What was your experience?
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 ...
OPLL (Ossification of the Posterior Longitudinal Ligament)
- By jh702 · New reply June 30, 2009
- 1 reply
- 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 ...
Tarlov cysts - just diagnosed
- By AndiG · New reply June 26, 2009
- 3 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 ...
Serpiginous Choroiditis
- By KevinG · New reply June 20, 2009
- 23 replies
- Any one know of a good doctor in or around Vancouver BC Canada ...
trigeminal neuropathy
- By Davidjoseph · New reply June 19, 2009
- 3 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 ...
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 ...
Parvo B19
- By tday · Posted June 15, 2009
- 0 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 ...
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 ...
Olliers Desease
- By sassy · New reply June 12, 2009
- 16 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 ...
Mcardles Disease
- By katieleigh · New reply May 21, 2009
- 8 replies
- Hello, my name is Katie I am 26 years old and a mother of two. I have been suffering from elevated CPK and muscle weekness and fatigue/spaming for 18 mths. I went that long without a diagnosis until today ...
meningiomas
- By Apple · New reply May 8, 2009
- 13 replies
- Want to know more about meningiomas, and share knowledge / discuss with professionals / patients and their families ...
I live in New Jersey
- By cadlee · New reply May 6, 2009
- 2 replies
- I live in NJ and there is only one MD that I can find that treats Primary Immunodeficiencies. This doctor has given 6 years of the lowest level of care. I think it is because I have Medicare and Medicaid ...
DDAVP - problem with fluid retention and high blood pressure
- By Betsey · New reply March 24, 2009
- 4 replies
- I was diagnosed and had surgery for acromegaly 7 years ago and then was diagnosed with DI and put on DDAVP. Since I have had severe fluid fluctuation issues, and most recently severe high blood. In a ...
DOCTORS w/ EDS Knowledge/ Experience in CT?
- By gem615 · New reply March 16, 2009
- 1 reply
- Looking for a list of ALL doctors in CT (or nearby) that have knowledge & EXPERIENCE with Ehlers Danlos Syndrome. Any/ all areas of expertise, but especially Spine Specialist (Orthopaedic & Neuro Surgeons ...
Catamenial pneumothorax
- By NeedHelpNow · New reply March 4, 2009
- 1 reply
- I've had symptoms of difficulty breathing, chest pain that radiates to my shoulder blade and pain under tmy right rib cage that worsens with each inhale through the start and duration of my menstrual ...
Gabriela's Salt Shaker
- By GGuajardo · New reply March 3, 2009
- 1 reply
- My daughter will be 3. She was diagnosed with a rare disease called Pseudohypoaldosteronism. This disease involves her kidneys and now possiby other organs. Gabriela's body holds no salt and is given ...
Methylmalonic Acidemia with homocystinuria
- By keerasmom · New reply March 2, 2009
- 2 replies
- Does anyone know any good metabolic specialists, I see Seattle's Childrens hospital, but have heard that maybe there's someone in Boston? I'm also looking for a good Ped. Coeur d' Alene Peds in Idaho ...
Steatocystoma Multiplex
- By sissybangs · New reply January 28, 2009
- 1 reply
- 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 ...
Fibromyalgia and Adderral
- By blessed375 · New reply January 13, 2009
- 10 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 ...
proteus Syndrome
- By Eamonn · New reply January 8, 2009
- 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 ...
