Finding a doctor

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

Discussions

CENTRAL PONTINE MYELINOSIS

• By grenay · New reply May 13, 2013
• 2 replies
• Hi, I SUFFER WITH CPM! A rare condition with permanent and debilitating prognosis. I joined INSPIRE to find answers and hopefully, find others who suffer, or have family members/significant others, suffering ...

mastocytosis causing severe osteoporosis

• By poppyvin · New reply May 3, 2013
• 3 replies
• My name is Jennifer and I live in Orange County NY. I am so frustrated about my friend who is so sick and getting worse by the week. He is on many different medicines for mastocytosis and osteoporosis ...

Nottingham University or Guy's & St Thomas' Trust?

• By mgimena · Posted May 3, 2013
• 0 replies
• After some hesitation by my partner's primary care trust, they have agreed to refer her to a Mastocytosis specialist. Since we live in Warwickshire (UK), our choices are Dr. Elisabeth Drewe at the Nottingham ...

OPLL

• By ddl116 (Inactive) · New reply May 1, 2013
• 12 replies
• I, too, have been recently diagnosed with OPLL. The orthopedic surgeon wanted to do 5 Laminoplasties from C3 thru C7. I, due to other obligations, could not do the surgery right now. The surgeon said ...

Olliers

• By pink2CV · Posted April 27, 2013
• 0 replies
• Can anyone recommend a doctor who specializes in Ollier's, my son has just been diagnosed. We are in South West England ...

Olliers

• By pink2CV · Posted April 27, 2013
• 0 replies
• Can anyone recommend a doctor who specializes in Ollier's, my son has just been diagnosed. We are in South West England ...

Isaacs Syndrome (Neuromyotonia, CFS) - Need a doctor!

• By RichieS · Posted April 22, 2013
• 0 replies
• Can anyone recommend a physician experienced in diagnosing and treating this condition in the Greater NYC area? (The local community office-based neurologists seem to be clueless.) Thanks much ...

Newbie says Hi & Does anyone know of a DR. who treats SPS in Mid Missouri

• By lee2001 · New reply April 18, 2013
• 2 replies
• My doctor, a neuromuscular doctor, finally got me a DX almost a year ago, after suffering for over 25 years.... sigh.... He is stuck on not writing pain medications, only diazepam, and only at 1 every ...

low killer cells / NK Cell / CFIDs / CFS

• By annacarla · Posted April 17, 2013
• 0 replies
• Nova university has a dedicated division for low killer cell / CFS/CFIDS. They have discovered people with chronic fatigue have low killer cell activity. i have this, and its aweful. I pray to God they ...

Dercums Disease

• By BeverlyH · New reply April 13, 2013
• 2 replies
• Has anyone found a Dr. for this disease ...

MCAS/Anaphylaxis Consult- Dr. Lieberman

• By Albymom · New reply April 7, 2013
• 1 reply
• I went to my first mast cell disorder consult appointment this week with Dr. Phil Lieberman in Memphis. He is a specialist in Anaphylaxis. He was very nice and took his time with me reviewing my medical ...

SMMCI

• By Wayounisa · Posted April 7, 2013
• 0 replies
• Anyone can tell me more about this syndrome. My son had a MRI done and it came back normal. There are so many things associated with this sydrome, I will appreciate if someone can share their experience ...

Any Cure For LGMD

• By anjanajay · New reply April 4, 2013
• 2 replies
• I am Anjana, a South Indian lady. I am 25 now. I had waddling gait from the day I started walking and i used to fall frequently. Everyone used to complain me about it. But those days I didn't have any ...

Tumor Induced Osteomalacia

• By Belleeckbones · New reply March 19, 2013
• 1 reply
• I have an extremely rare condition called Tumor Induced Osteomalacia or Oncogenic Osteomalacia. There have only been about 200 reported cases in medical literature. Has anyone else been diagnosed with ...

sps experts? nyc area but will travel

• By CaveDragon · New reply March 19, 2013
• 12 replies
• Hey all. My husband has now had a second GAD65 test that came back negative (the first was positive but low). He just had a spinal tap and we are waiting for those results, but we are told it will take ...

Familial Mediterranean fever / FMF specialist in Toronto

• By 0ak · New reply March 13, 2013
• 5 replies
• Hello, can anyone please help me find a doctor in Toronto with experience treating Familial Mediterranean fever (FMF). Many thanks ...

Surgery with Dr. Feigenbaum

• By idit · New reply March 11, 2013
• 4 replies
• my 16 year old daughter have tarlov cyste (1 cm) and she is suffering a lot cannot sit, cannot walk is anyone did the surgery with dr f . and how does you feel now ...

anyone in Pittsburgh pa area

• By momplut · New reply March 10, 2013
• 1 reply
• Hi my daughter just got her indolent SM diagnosis after years of dead end doctor visits. Just last week she got her ranitidine cromyln and allegra scrips and was told come back in a month. It seems not ...

Dr. Lugar

• By lisa-434 · Posted March 4, 2013
• 0 replies
• Hi, I'm from Louisiana and have a mass cell disorder. I traveled to Boston last year to see Dr. Castells who is wonderful but I'm looking for a doctor I could see closer that treats for this condition ...

TMEP Doctors

• By Slanejbc · New reply February 28, 2013
• 1 reply
• Can anyone recommend a doctor for TMEP in Oklahoma? I see a dermatologist but I would really like to see someone that specializes in this condition. I don't feel like I am getting anywhere with the dermatologist ...

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