Already a member? Sign in

Welcome to Inspire!

What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.

Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.

How - Joining Inspire is completely free and usually takes less than a minute. Join now!

Finding a doctor

People with rare diseases sometimes have trouble finding a doctor. What was your experience?

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 ...

I live in New Jersey

By luvwolvez · 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 ...

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 ...

HELP!

By KerryEngle · New reply January 5, 2009
1 reply
My Mother came all the way from California in 1996, to live with me in Pennsylvania. Due to horrific pain from Trigeminal Neuralgia she was unable to continue working. She has tried everything that we ...

diphallia, imperforate anus, horseshoe kiney...multiple defects

By rasvak · New reply January 1, 2009
6 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 ...

henoch-schonlein purpura

By joannesosa · New reply December 12, 2008
15 replies
My son has (HSP) he is only three yrs. and has had this fullblown for over four weeks and no Dr. can give me a solution to my sons pain. His body has a very painful rash, all over its a reddish purple ...

Can a fall injure this condition?

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 ...

Erdheim Chester Disease

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 ...

Leri Pleonosteosis

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 ...

Pediatric Vascular Neurosurgeon needed

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 ...

connective tissue disorder and surgery

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 ...

Tumors, tumors everywhere

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 ...