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Isaac's syndrome
- By Lynn2 · New reply 7:04 pm
- Discussion in Getting a diagnosis · 1174 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 ...
diagnosing fever syndromes does anybody know?
- By bumkin · New reply 5:53 pm
- Discussion in Getting a diagnosis · 1 reply
- does anyone know of any specialists outside of the u.k who might be able to give advice on diagnosis of fever syndromes as we feel we are coming to a dead end after doing loads of research and spending ...
bpd
- By denisehenshaw · New reply 5:38 pm
- Journal · 4 replies
- Just found out my child has BPD and I am scared. he is not due till dec 8th but i had him on sept 26th. he has never been on a vent until 2 days ago he got put on one for the first time. I dont know what ...
Just thinking....needing a little encouragement
- By MelissaShuford · New reply 4:58 pm
- Journal · 5 replies
- OMG I don't know whats happening but I feel like the Tin Man in the Wizard of Oz. I am so stiff and ache all over...dumb me fell again at the mall...seem to trip over my own feet from being so stiff...my ...
Social Security Disability Process
- By tmichaelroche · New reply 4:35 pm
- Discussion in Finding emotional support · 6 replies
- I have begun the process of applying for SSD/SSI after my 4th Lumbar surgery ruined my back forever! I know what I am in for as far as the denials and paperwork and hearings etc.... I'm just look for ...
Question to anyone who would know ..
- By shortstuff · New reply 3:29 pm
- Journal · 5 replies
- Can or does R.A. cause loss of sleep ...
OCTREOTIDE and P.O.T.S
- By InSyncopy · New reply 1:52 pm
- Journal · 7 replies
- Hello everyone! I am going to see a specialist in Children's Hospital Yale/New Haven within the next two weeks. When I do finally get there, I want to be ready! I have been researching some medications ...
anhidrosis and a raft of other oddities
- By Nan · New reply 1:34 pm
- Discussion in Getting a diagnosis · 40 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 ...
Update on Tyler
- By snugglebearsmom · New reply 12:44 pm
- Journal · 4 replies
- Tyler recently returned from his 1 year checkup at Duke with Dr. Prasad (October). There aren't any signs of further progression, same as his 9 month checkup. He is off of most of the meds, including ...
Help dignose me
- By skittles · New reply 11:11 am
- Discussion in Getting a diagnosis · 21 replies
- I have continued lactic acid burn in my muscles, even in my jaw when I talk. I have it everywhere. Just before I cry the burn is there. Typing this gives me burn in my arms and hands. I cannot feel when ...
stressed out mom
- By mom23grls · New reply 10:32 am
- Journal · 3 replies
- my daughter is facing yet another mri to check her chiari. She is my light in my every day. She was having a headache flare up today. Some days I feel so bad because I can't help her ...
Lost organ!!!!!!!!
- By Nina372 · New reply 10:21 am
- Journal · 5 replies
- So currently I have been having problems with passing out and graying out because of my condition and after trying to explain it to my friends a hundred times and them not getting it I wrote this ...
COURAGE
- By tmichaelroche · New reply 9:16 am
- Journal · 2 replies
- Courage is a special kind of knowledge; the knowledge of how to fear what ought to be feared, and how not to fear what ought not be feared. From this knowledge comes an inner strength that subconsciously ...
It can always be worse / inspirational quote
- By tmichaelroche · New reply 9:12 am
- Journal · 1 reply
- Quotes to Lift You Up When You’re Feeling Down Uplifting quotes for hard times As we strive to make it through difficult times, hearing the wisdom of those who have struggled, questioned and dreamed ...
I have Eosinophilic Fasciitis
- By barbear · New reply yesterday at 10:34 pm
- Discussion in Finding emotional support · 9 replies
- I wasa diagnosed with Eosiniphilic Fasciitis, a rare auto immune disease, in Oct. of 2008. I've tried several other sites attempting to find others with this, but have had no luck. It would just be so ...
SO excited to share what I have found!
- By pwrsrg77 · New reply yesterday at 10:32 pm
- Journal · 48 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 ...
Cinderella Emmy
- By MelissaShuford · New reply yesterday at 8:59 pm
- Journal · 7 replies
- Thanks for all your prayers!!!!! Emmy won 2010 Junior Miss Claremont!!!! She is so giddy and excited!!! Love to see her so happy ...
stiff person syndrome
- By docmaus · New reply yesterday at 8:38 pm
- Discussion in My disease has no treatment · 29 replies
- By docmaus Posted today at 4:51 am · 0 replies Shared with the public Edit · Delete 0 RecommendationsRecommendPrintReport postIt is like having multiple sclerosis, parkinsons, and tetness. most of all ...
Nerve Block for Trigeminal Neuropathy
- By linnirose · New reply yesterday at 7:40 pm
- Journal · 4 replies
- My neurosurgeon has suggested a nerve block for my 24/7 Trigeminal Neuropathy. Has anyone tried this, or does anyone have any information regarding this? I would really appreciate anything you know about ...
Diagnosed with another disease.
- By 1955-53 · New reply yesterday at 7:13 pm
- Journal · 1 reply
- Now I have been diagnosed with diabetes along with Stiff Person Syndrome. It has been quite a year, two disease diagnosed in 6 months. Oh well, you just have to keep on keeping on. Fight to the finish ...
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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.