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Leaving for Surgery soon
- By angel50 · New reply 2:00 pm
- Journal · 3 replies
- Hi all, Well, I am off in about 30 minutes for surgery. Wish me luck. Feeling quite anxious right about now. Will talk soon. angel50 ...
Mayo Clinic and SPS
- By DebW · New reply 1:36 pm
- Journal · 3 replies
- I saw my Internal medicine Dr. on Dec. 7th. He hadn't seen me in 8 months. He told me not to say a word because he saw me walk in. He took me by the hands and apologized to me for what the medical profession ...
Tremors that "rock my world" from the inside out.
- By jupiterjane · New reply 12:49 pm
- Journal · 29 replies
- I have been experiencing tremors that seem to start from deep inside my body. It starts with a slight rumbling in my chest and then spread throughout my body and increases with intensity until my whole ...
periodic fever
- By savannahsmommy10 · New reply 12:36 pm
- Discussion in Getting a diagnosis · 5 replies
- my daughter was diag with phapa periodic fever at 1year now she's 18 mts on cimeditine twice a day would love to hear from other moms .. also wondering if there is a link between phapa and my daughter ...
Bladder retention and Tarlov Cyst
- By Ayche · New reply 12:16 pm
- Discussion in Finding a doctor · 6 replies
- Hi, sorry for starting another topic on Tarlov Cyst, but I was wondering how many people who suffer with TCs have their main problem being bladder rentention? While I do have back and nerve pain, to me ...
OPCA
- By peggi37 · New reply 12:02 pm
- Journal · 3 replies
- My husband was diagnosed with Olivopontocerebellar Atrophy (OPCA) in 1999.He is now confined to a wheelchair. I would like to chat with someone that has this disease. Since the disease so rare, there ...
OPLL (Ossification of the Posterior Longitudinal Ligament)
- By H541 · New reply 11:39 am
- Discussion in Finding a doctor · 39 replies
- Help!!! I need to find a doctor that knows something about OPLL within the US. Has anyone been diagnosed with OPLL and have you found a doctor that knows about the rare spine disease in the west part ...
SomeTimes I just dont know what to do anymore
- By ButterFlyGirl86 · New reply 10:53 am
- Journal · 4 replies
- I have been thinking alot about why things happen and I know that things happen for a reason we just dont know why it happens at the time. But I would love to know why now. I am only 23 and happly married ...
I'm a freak
- By swtlilwamom · New reply 10:35 am
- Journal · 32 replies
- Just a simple poem I thought of today I AM A FREAK You stare and point, at something new. If I am a freak, than so are you. It's ok that you dont understand But I'm just like you, with bumps on my neck ...
Down on being down
- By dizzylakota · New reply 10:31 am
- Journal · 1 reply
- Had a very busy week babysitting, and now I'm sitting here just wore out facing cleaning a wholw house and laundry of my own. I am so tired it's not funny. I'm falling asleep at the computer waiting for ...
School & Chronic Pain
- By mtngoats · New reply 9:47 am
- Discussion in My child and school · 15 replies
- What are others doing about schooling? My 13 has RND and is in so much pain she doesn't sleep, is in terrible pain throughout the day. We have a 504, but she is begging for homeschooling. Her dad and ...
My Body is turning me into a Disabled Young Adult....
- By MzDai · Posted 8:27 am
- Discussion in Getting a diagnosis · 0 replies
- Hello Everyone, Iam new to this site, and I currently do not know where to turn for answers. For my unknown health problem. It has been 3 years and counting since I was able to perform the daily body ...
INdolent Systemic Mastocytosis
- By SpottedinAlbany · New reply 8:23 am
- Discussion in How my disease has changed my life · 5 replies
- I have Indolent systemic mastocytosis x 10 years of symptoms with 4 yrs of treatment. I wonder, has any out there experienced bone pain? I'm having some deep, pain in the pelvis, and right thigh that ...
MY PARTNER HAS WALKED AWAY FROM ME....
- By sonia40 · New reply 6:40 am
- Journal · 96 replies
- Hello all just wanting to vent off a little....my partner of 6 yrs has finally packed his bags and walked away...leaving me with my 3 children and our 2 children together...his excuse??? well he couldnt ...
My wonderful daughter has become disabled from TRAPS
- By marylouise · New reply 1:50 am
- Discussion in Tips for caregivers · 10 replies
- My daughter, who is now 28, seemed to be on a fast track to success. She was 24 and finishing up her masters degree. She was simulataneously taking doctorate level classes and teaching undergraduate students ...
Panhypopituitarism
- By jackfwms · New reply 1:33 am
- Journal · 24 replies
- I've had this condition since 1988. The result of a brain injury. It feels as if my brain is slowly dying. I have no idea what to expect next. In Feb. 2009 I was diagnosed with type 2 diabetes. I'm taking ...
My symptoms
- By mpaque · Posted yesterday at 11:59 pm
- Journal · 0 replies
- I am new to this site, but I wanted to see if any one has similar symptoms. For the past month I have been really unbalanced when I walk, but when I'm sitting or sleeping I'm usually fine. Sometimes when ...
i got my results to my nerve condcution study
- By hills24 · New reply yesterday at 10:13 pm
- Journal · 8 replies
- The doctor said i have mild nerve damage....I don't know what that is or if it could even be cured..but now she is going to send me to a neurologist..so i'll let everyone know whats happening ...
What do you do when the dr. says we have done all we can
- By screwed2009 · New reply yesterday at 10:10 pm
- Discussion in My disease has no treatment · 25 replies
- Yeah, Can you believe that. They said we are at the end of the road....nothing we can do for you, Gave me the name of a pain management Dr..... I want to SCREAM.... The pain is unbearable. Trigeminal ...
living with trigeminal neuropathy
- By bkayliegh · New reply yesterday at 9:47 pm
- Discussion in Finding emotional support · 4 replies
- i have lived with trigeminal neuropathy for 14 years,i have been on several meds.but nothing helps.now i live in bed have severe facial burning,stabbing pain in my skull,facial pain.my husband lost his ...
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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.