Finding a doctor

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

Discussions

Remove tumor vs. whole gland

Nefertuti
  • By Nefertuti · New reply August 23, 2010
  • 6 replies
  • I was wanting to see who has had only a tumor removed from the adrenal rather than the whole gland removed and if so how they were doing post surgery? Nefertuti ...

Chemicals, Immune System and Malabsorption...What is their relationship

hooked1 (Inactive)
  • By hooked1 (Inactive) · New reply August 22, 2010
  • 10 replies
  • I have been very ill over the past two years or so and have lost 55 pounds. The weight loss is due to not being able to eat foods that have any type of fat or animal/fish protein in it. I had my Gall ...

Hyper IgE Sydrome/Jobs Disease... so alone and lost!

LisaAnne
  • By LisaAnne · New reply August 19, 2010
  • 5 replies
  • Hello, I am the mother of a young adult son who was diagnosed at age 17 with Hyper IgE Sydrome/Jobs Disease. It's a very rare disease that many doctors know nothing about. Our son Kyle was first diagnosed ...

Tarlov Cysts

Lilian10
  • By Lilian10 · New reply August 10, 2010
  • 34 replies
  • I was diagnosed last year with a Tarlov Cyst, 2 weeks ago i had a fall and hurt my tailbone I have had a flare up of the Tarlov Cysts so severe that I am bed ridden. I live in California and would like ...

Familial Mediterannian Fever

Hayem
  • By Hayem · New reply August 6, 2010
  • 2 replies
  • Can anyone recommend a doctor in Virginia who knows about FMF? The primary care physician doesn't even seem to know what specialty should handle this: immunology? nephrology? allergy? Any tips would be ...

Tarlov Cyst surgery in Britain

scottishlass
  • By scottishlass · New reply August 3, 2010
  • 8 replies
  • I have just been on the Tarlov Cyst Foundation website and there is no surgeon listed in Britain who would carry out the procedures which might alleviate these dreadful symptoms.My neurosurgeon refuses ...

sticky, cold and stings saliva

tybaby
  • By tybaby · Posted July 27, 2010
  • 0 replies
  • I NEED TO KNOW OF SOMEONE WHETHER IT'S A FOREIGN DOCOR OR WESTERN MEDICINE DOCTO, I NEED HELP FINDING OUT WHY MY ENTIRE BODY IS FEELING LIKE PSTE, MUD OR GLUE INSIDE, WHEN I SHOWER AND WASH OFF IT SPREADS ...

periodic Fever syndrome

watson27
  • By watson27 · New reply July 26, 2010
  • 5 replies
  • I am a nurse - not working at the moment - and we as a family live in France. My son had menigitis at 7 months old. He had a weakened immune system afterwards but had not been tested since. He has always ...

Tarlov Cyst

Massmatter
  • By Massmatter · New reply July 20, 2010
  • 1 reply
  • My son Jordan had surgery in 08 at Children's Hospital in Columbus, Ohio by Dr. Kosnik. He told us that he removed the cyst and re routed the spinal fluid. He did not, do not believe a word he tells you ...

Hair and nail biting and eating

123val (Inactive)
  • By 123val (Inactive) · New reply July 20, 2010
  • 1 reply
  • Hello, I am new to this and would like help finding a doctor to help with my problem. I have been biting my nails and biting and eating my hair for as long as I can remember ...I am 28 years old now..my ...

leri-weil

logosvital
  • By logosvital · New reply July 19, 2010
  • 1 reply
  • I am 32 y/0, 5 ft., 105 lbs., work in narcotics for a police department and am very active. I run mostly sometimes on a treadmill...sometimes chasing people. I also have leri-weil or at least a doctor ...

chronic pancreatitis

fresh04
  • By fresh04 · New reply July 15, 2010
  • 1 reply
  • My local gastro sent me to the Cleveland Clinic for an EUS. I did that the 28th of may. They said I had 4 of 10 for chronic pancreatitis. The Clinic is 2 1/2 hours away from me. June 6 I went to the ER ...

Tarlov cyst surgery in UK

safletsuk
  • By safletsuk · New reply July 13, 2010
  • 2 replies
  • Has anyone in the UK had Tarlov Cyst surgery with Mr Adrian Casey ...

Fibromyalgia and Adderral

blessed375
  • By blessed375 · New reply July 7, 2010
  • 17 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 ...

OPLL (Ossification of the Posterior Longitudinal Ligament)

H541
  • By H541 · New reply July 7, 2010
  • 55 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 ...

3MCC

3mcc
  • By 3mcc · New reply July 6, 2010
  • 5 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 ...

Tarlov cysts - again

willow1012
  • By willow1012 · New reply June 28, 2010
  • 19 replies
  • Has anyone every heard of somebody HAVING surgery for these things & having a "good" outcome? All I have every read about was the Kansas Dr testimonials and of course they are not going to print bad ones ...

madelungs deformity

las03
  • By las03 · New reply June 27, 2010
  • 20 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 ...

Muckle Wells

mintchip
  • By mintchip · New reply June 25, 2010
  • 10 replies
  • My 3 year old daughter may have muckle wells. I am trying to find a doctor who has actually treated this disease before...not just read about. Does anyone have any leads on where they have gone for diagnosis ...

Multiple Pterygium Syndrome (Escobar Syndrome)

sweetluvgurl
  • By sweetluvgurl · Posted June 17, 2010
  • 0 replies
  • I'm 25 and reside in NC. I can't really find a doctor to help with adults who have Multiple Pterygium Syndrome. Actually, I don't think I've ever met a doctor who knew about the condition period. Anyway ...
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