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Recommended discussions
Isaac's syndrome
- By Lynn2 · Posted March 23, 2007
- In Getting a diagnosis · 14 recommendations
- Does anyone have Isaac's syndrome or have a relative or friend who does? Also, if you are just knowledgeable about this disease... Thanks, Lynn ...
"You Can't Have That or You'd Be Dead By Now!"
- By caringcounterparts · Posted August 31, 2007
- In Getting a diagnosis · 13 recommendations
- For a little bit of fun (I figured we could use it) I thought I'd start a collection of ridiculous comments from doctors that we've all received as we tried to get a diagnosis. I'll kick off the list ...
Undiagnosed - Prop. Legislation: H.R.:2538 .. Undiagnosed Diseases Registry
- By turtle102301 · Posted June 5, 2009
- In Getting a diagnosis · 6 recommendations
- My Name Is Heather Long and my son died at the age of 5 from an undiagnosed disease. On May 21, Congressman Carter proposed legislation on my request, that if passed, would create a National Undiagnosed ...
Loveology - a poem to inspire
- By Poetessa · Posted March 28, 2008
- In How my disease has changed my life · 6 recommendations
- Since my diagnosis I have viewed life differently. I truly value the good moments more and more though the bad moments are still so very hard to bare sometimes. I have the worst time with the pain that ...
CMTC USA meeting 18th July 2009
- By LexVanDerHeijden · Posted February 24, 2009
- In Getting a diagnosis · 5 recommendations
- On Saturday afternoon the 18th of July 2009 the CMTC USA meeting will be organized again in Washington DC. The meeting will be organized by Lex van der Heijden, president CMTC, and one of the medical ...
17 year old daughter with Tietze's syndrome....HELP!!!
- By sheila_r · Posted August 20, 2008
- In My disease has no treatment · 5 recommendations
- Hello, I am new to this group... But my problem is with my 17 year old daughter who was originally diagnosed with costochondritis...but has had nothing but severe, chronic PAIN!!-(which they call: Tietze's ...
Conn's syndrome (hyperaldosteronism)
- By jacque · Posted April 12, 2008
- In Finding emotional support · 5 recommendations
- I would like to know someone else's story about their experience with Conn's syndrome. What were their symptoms before they were finally dignosed, and what is their treatment (medication or surgery ...
ollier's disease
- By ILOVEMYGRANDKIDS · Posted January 4, 2009
- In How my disease has changed my life · 4 recommendations
- my dauthder has olliers disease,when she was born she was fine she looked fine she was a beautiful baby, she was born in 1977 . when it was time for her to star walking, she would sit down on the floor ...
Cramp Fasciculation Syndrome
- By Griff · Posted November 9, 2008
- In Getting a diagnosis · 4 recommendations
- For two years I have been having electric shocks in my arms and hands, muscle twitches all over, and excruciating stabbing pains in my thighs and calves. This week I was finally diagnosed with Cramp Fasciculation ...
Trigeminal NEUROPATHY
- By twowesties · Posted April 9, 2008
- In Finding emotional support · 4 recommendations
- I have trigeminal neuropathy (not neuralgia) which has totally changed my life. Until my dr. put me on Cymbalta, the burning pain in my upper back teeth was intolerable. The only thing which helped was ...
Systemic Mastocytosis
- By doglvr123 · Posted May 8, 2009
- In How my disease has changed my life · 3 recommendations
- My husband has just been diagnosed with this and I know absolutely nothing about it. Can someone give me some insight? Thanks, Sonya ...
Differential - All input welcome!
- By dennisandkristen · Posted October 30, 2008
- In Getting a diagnosis · 3 recommendations
- The differential includes but is not limited to: Shortness of breath worsening with exertion/exercise intolerance Arthralgias Myalgias Spasms Feet and ankle contortions Nerve and muscle pain worst in ...
question
- By jeanie379 · Posted February 13, 2008
- In Getting a diagnosis · 3 recommendations
- Hi, I've learned so much from reading everyone's posts.....this is the first email I look at each morning. I am worried right now and was wondering if anyone had heard of this problem. I had an MVD, crianotomy ...
Rare Disease Database???
- By Adwyer · Posted July 21, 2009
- In Getting a diagnosis · 2 recommendations
- It seems like many doctors and suffers need a centralized database of symptoms and corresponding disease culprits to help diagnose or at least narrow down the rare diseases. I have found several that ...
Conn's Syndrome and Kidney pain
- By nikki_G · Posted June 8, 2009
- In How my disease has changed my life · 2 recommendations
- I was wondering if anyone one else with Conn's syndrome gets extreme kidney and flank pain. I have regular bouts of extreme pain and spend quite a bit of time in hospital but the doctors here do not know ...
Menkes disease
- By menkesdisorder · Posted May 20, 2009
- In My disease has no treatment · 2 recommendations
- My son has Menkes disease. It is a rare genetic disorder. Does anyone here have any advice? I can't get any copper supplements here for my son. I need some information on what is the progression of the ...
Chondrocalcinosis CPPD
- By 1irishman · Posted May 7, 2009
- In My disease has no treatment · 2 recommendations
- Does anyone have this disease? Looking to find anyone interested in having a support group. How do you deal with the constant pain? Need someone to talk to who knows what it is like ...
How could we make this more helpful?
- By InfoatNORD · Posted April 13, 2009
- In How my disease has changed my life · 2 recommendations
- Hi. We're redesigning NORD's website and that provides an opportunity to evaluate how this community works. Please take a few minutes to share your thoughts with us. What features do you find helpful ...
Do you feel Rare diseases get mainstreamed?
- By whtmtnspirit · Posted February 25, 2009
- In How my disease has changed my life · 2 recommendations
- I don't fit in.. even when i'm with others disabled, i don't fit in.... I need wheelchair accessible housing.. not because i'm in a wheelchair, but to allow that safety zone around me so i can have involuntary ...
Looking for other parents of young kids with rare diseases
- By OverloadedMama · Posted February 5, 2009
- In How my disease has changed my life · 2 recommendations
- My 6-month-old daughter was just diagnosed with Gaucher's disease, a very rare genetic metabolic disorder with lifelong physical and possibly neurological symptoms. I wanted to know if there are any other ...
