Recommended discussions
- By Lynn2 · Posted March 23, 2007
- In Getting a diagnosis · 7 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 ...
- By caringcounterparts · Posted August 31, 2007
- In Getting a diagnosis · 6 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 ...
- 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 ...
- By sheila_r · Posted August 20, 2008
- In My disease has no treatment · 3 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 ...
- 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 ...
- By tdhssp · Posted September 3, 2008
- In Getting a diagnosis · 2 recommendations
- Hello, my name is Velvet and my child was born in 1993 with a rare chromosome duplication known solely as tetrasomy 18p. NORD was imperative in helping me link to other individuals with similar diagnosis ...
- By rabsab57 · Posted August 23, 2008
- In Getting a diagnosis · 2 recommendations
- I have had RLS for many years now I am have sizures and have been told that I now have myoclus i also have high colestrol and arthritis and I have a double by-pass in the pass 5 years ...
- By ShortCutie-VACTERL · Posted July 25, 2008
- In Finding emotional support · 2 recommendations
- I recently moved back from Florida to New York, and now I struggle. My biggest struggle is in finding a job. I ran out of savings months ago and now am living off of my parents. Fun fun fun. My plans ...
- By walter_comer · Posted June 28, 2008
- In How my disease has changed my life · 2 recommendations
- Interesting little adventure this morning. I'll leave out the long part. But, I wound up getting the # of someone at the bigger newspaper in Western NC. I called the lady there, and they may, at some ...
- By jacque · Posted April 12, 2008
- In Finding emotional support · 2 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 ...
- By Poetessa · Posted March 28, 2008
- In How my disease has changed my life · 2 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 ...
- By Theresa3 · Posted February 17, 2008
- In How my disease has changed my life · 2 recommendations
- Hi everyone, I am a student in Massage therapy school and we had an assignment for class. It was to find a muscle disease and write about it and determine what manipulations to use on this person. First ...
- By kelsi6 · Posted October 18, 2008
- In My child and school · 1 recommendation
- My daughter just got a diagnosis today, but it all started a week ago, on saturday she had pain in her ancle, then sunday the rash came up and her ancle was swollen but her knee hurt, now today i get ...
- By maracay76 · Posted August 20, 2008
- In Finding emotional support · 1 recommendation
- Someone talk to me about this.. I really am at my wits end with these. I can do most things but I always end up with a lot of stiffness and most of all pain in my legs and lower back and lately my neck ...
- By csmp · Posted May 27, 2008
- In Tips for caregivers · 1 recommendation
- Does anyone know of any new research or treatment for HEREDITARY SPHEROCYTOSIS? My husband, our two children, and now our grandchild has this blood disorder ...
- By JudyC · Posted May 14, 2008
- In Finding emotional support · 1 recommendation
- I am having a hard time finding someone to corresponde with who has McArdles Disease. If there is anyone out there, please contact me ...
- By thejae · Posted March 29, 2008
- In Finding emotional support · 1 recommendation
- In the last few weeks, I've begun searching for moms and dads of children who have been diagnosed with Diploid Triploid Mosaic Syndrome, or Mosaic Triploidy. Right now, there are 17 in the world, that ...
- By skittles · Posted February 26, 2008
- In Getting a diagnosis · 1 recommendation
- I lost my first message so here goes again and i wonder if it will show up somewhere. Ha! I was test for SPS and the EMG was normal but I noticed another person with the dignosis with normal EMG. Questions....does ...
- By Kyla · Posted November 12, 2007
- In Getting a diagnosis · 1 recommendation
- I have just been diagnosed with ocular neuromytonia. At least I presume its the ocular kind as it is only my eyes effected. It doesnt have a major impact on things fortunately though I would be interested ...
- By chiilin · Posted September 12, 2007
- In Finding a doctor · 1 recommendation
- Hi, I'm in Louisiana, and having to find a new doctor because of insurances changes. My present primary care doc is wonderful. Even though he doesn't know everything about everything, he is very open ...
