The NORD Rare Disease Support Community connects patients, families, friends and caregivers for support and inspiration... More about this group
All new and active discussions & journals
Trying to live with Trigeminal nerve pain after dental trauma procedure ,
- By BABYTBEAR · New reply 7:37 pm
- Journal · 6 replies
- The more I read and study , the more I realize I am not alone ,,, I have spent 14 months looking ,begging ,praying , crying, reading and paying for help with no dental insurance or medical insurance ...
Cramp Fasciculation Syndrome
- By Griff · New reply 7:22 pm
- Discussion in Getting a diagnosis · 76 replies
- 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 ...
Pulmanry Problems ??????CONFUSED!!!!!
- By Rodeogrl02 · New reply 7:08 pm
- Journal · 9 replies
- I told my neurologist whom I see for dysautonomia that I keep getting really short of breath with very little exsertion, just like walking a few feet or up a few stairs, so she ordered a pulmonary function ...
Trigeminal Nerve Damage
- By neversame · New reply 6:56 pm
- Journal · 49 replies
- Hello to all sufferers. Used to be happy, outgoing, adventurous and PAIN FREE until March, 2004. I had a root canal done by a dentist that must have wanted to milk my full coverage dental insurance. All ...
SO excited to share what I have found!
- By pwrsrg77 · New reply 6:41 pm
- Journal · 16 replies
- I have received TONS of wonderful support from this amazing community of people just like myself. All that struggle with debilitating symptoms, wrong diagnosis, less than quality doctors etc... I wish ...
Cutis Laxa?
- By damesbond · New reply 5:50 pm
- Discussion in Getting a diagnosis · 5 replies
- I wish to share my full story, in hopes that a medical professional might read it, or someone who recognizes the symptoms. In DEC 99, I felt a pulsating sensation beside my left shoulder blade. Doc kept ...
I have IGAn . . .
- By jbon317 · New reply 5:36 pm
- Journal · 19 replies
- this is all so new to me ...
Systemic Mastocytosis and other Autoimmune Diseases
- By Djkmom · New reply 5:07 pm
- Discussion in How my disease has changed my life · 18 replies
- I have to practically live in a bubble. When I get sick, I get REAL SICK! I was diagnosed almost 2 years ago... I would like to talk to people that are going through the same thing that I am. From what ...
Help, my daughter has Periodic Fever Syndrome
- By AnnaLeeR · New reply 4:52 pm
- Discussion in Getting a diagnosis · 8 replies
- I need help!!! My daughter, two months ago was diagnost with Periodic Fever Syndrome, however they are still trying to determine which form. They believe it could be any of the 7 hereditary forms, or ...
Bowel Obstruction from J-tube?????
- By Rodeogrl02 · New reply 4:32 pm
- Journal · 4 replies
- I had a colonoscopy and an endoscopy this past monday (the colon part because of having severe diarrhea for weeks), then before we started the procedure my dr asked if he could add on an endoscopy last ...
Isaac's syndrome
- By Lynn2 · New reply 3:32 pm
- Discussion in Getting a diagnosis · 1110 replies
- 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 ...
RND and Yoga
- By zanypaws · New reply 2:32 pm
- Journal · 1 reply
- My daughter is 13 and has Reflex Neurovascular Dystrophe. Is there anyone out there with this condition that has had success or not with Yoga? I feel like I'm spinning my wheels ...
RND
- By softballgirl · Posted 2:05 pm
- Discussion in Getting a diagnosis · 0 replies
- I just got diagnosed with rnd and I've had pain since I was 5 years old and now i have to wait to get into the institute has anyone been there? I'm nervous and I'd like to know what It's like there ...
symptomatic tarlov cyst surgery
- By ap12 · New reply 1:24 pm
- Journal · 21 replies
- Heard again from my neurosurgeon today. He reviewed my past MRI's with my current ones and concluded surgery sounds like the best option. My symptoms fit with S1 compression where my large tarlov cyst ...
Disability
- By gigglebox · New reply 12:54 pm
- Journal · 6 replies
- I am so so excited!!! After a year of waiting i got approved. I didn't even get the ususl first denial. I needed the insurance so bad. Now maby i can get to a doc that can be more help. Or will it be ...
"HYPOKALEMIA OR LOW POTASSIUM"
- By mandyblue · New reply 12:18 pm
- Journal · 32 replies
- I want to share this research information in "My Journal". This is a very long collection of articles, that explains in great detail, about Hypokalemia or Low Potassium. It is for anyone who needs help ...
indolent systemic mastocytosis
- By marcia3 · New reply 12:10 pm
- Journal · 14 replies
- I would like to communicate with someone who has indolent systemic mastocytosis. I would like to find someone who understands what I am going through. Thanks ...
nerve root sheath tumor
- By aware · New reply 10:27 am
- Journal · 4 replies
- I have been having severe pain in my groin on the right hand side. Was told that it was probably a trapped nerve after an internal operation showed nothing wrong inside. I had an ultra sound done for ...
Masto symptoms.. hot skin but no fever?
- By katherine67 · New reply 4:49 am
- Discussion in Getting a diagnosis · 6 replies
- I'm working on getting a diagnosis for my 3yo daughter, Hannah. One of the things I think I'm noticing with her is that she feels very hot during a flare, but sometimes shows no fever (or it fluctuates ...
anhidrosis and a raft of other oddities
- By Nan · New reply 12:50 am
- Discussion in Getting a diagnosis · 35 replies
- My 19 year old daughter cannot sweat - nor has she since birth. She tires easily and has unexplained fevers and aches and pains in her joints that come and go in clusters. We've been to every "ist" (specialist ...
- More »
- New
- Active
- Discussions
- Journals
Sign in to see more
Inspire others
Group leaders
Discussion topics
You
About this group
The NORD Rare Disease Support Community connects patients, families, friends and caregivers for support and inspiration. The NORD Rare Disease Support Community is sponsored by the National Organization for Rare Disorders in partnership with Inspire.