Home - NORD Rare Disease Support Community - Inspire

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

Liver enzymes up, weight down, energy down, life gone

By Zacolton · New reply 10:12 pm
Journal · 3 replies
Ugh, I feel backed into a corner right now. So about a month and a half ago I got a blood infection and had to go to the hospital to get it treated. That's fine and all, but I waited a week with absolutely ...

Gastroparesis after Nissen Fundoplication.

By ajonesy · New reply 5:42 pm
Journal · 12 replies
Has this happened to anyone? Help ...

New here...another w/o diagnosis

By sarahlea1717 · Posted 3:28 pm
Discussion in Getting a diagnosis · 0 replies
Hi, I just wanted to post a little intro for myself. My name is Sarah, I'm 25 yrs old, and I live in Wisconsin. I have an unknown neuromuscular condition. In the past I have beenj diagnosed with CIDP ...

I don't know where to start...

By extreme · New reply 3:17 pm
Journal · 3 replies
I have been diagnosed with Jessner's, diabetes, hypothyroid, arthritis, intercystalcystitus and am on medication for all of them. I have pain in my joints, muscles, digestive and urinary tract, etc.A ...

23 yr old with HSP

By camae · New reply 10:58 am
Discussion in Medicare, medicaid and medical insurance · 15 replies
Hi, I've written about my son before, he's 23 yrs old and has been sick with HSP since he was 21. He suffers greatly with Purpura, Petichiea, joint pain and swelling and has experienced bleeding in his ...

Isaac's syndrome

By Lynn2 · New reply 12:19 am
Discussion in Getting a diagnosis · 188 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 ...

Isn't it strange...

By ShannonZ · New reply yesterday at 11:55 pm
Journal · 4 replies
that quite a few of us on here have more then one health "issue"? We ALL must be tough cookies ...

Tarlov cysts

By Tam · New reply yesterday at 7:50 pm
Discussion in Getting a diagnosis · 7 replies
I have had back pain, leg pain, and headaches. If I walk for more than 15 minutes I'm in pain, same with sitting. I wake up during the night 2 to 4 times because of the pain. This has been happening now ...

Gait problems & Stiff Person Syndrome (SPS)... Any hope?

By serendipity · New reply yesterday at 6:50 pm
Journal · 28 replies
I have found quite a few other postings regarding SPS, so I would like to share this and am hopeful that some of you can offer your input.... I am posting this in all of the Groups to which I belong in ...

Am I the only one?

By beansy · New reply yesterday at 5:58 pm
Discussion in Finding emotional support · 2 replies
I have searched for a long time, and have never found another person who has had an arterial venous malformation and bleed of brain, brain surgery, or the resulting homonymous hemianopsia, a vision disability ...

10 year old with extreme case of HSP

By Hjohn73 · New reply yesterday at 3:45 am
Discussion in Getting a diagnosis · 1 reply
This is long, but this will help everyone take seriously henoch schonlein purpura. My daughter was diagnosed with HSP in early May. It took 4 trips to 3 different emergency rooms for her to be diagnosed ...

stiff person syndrome

By screamer · New reply July 22, 2008
Discussion in Getting a diagnosis · 14 replies
I am having debilitating spasms they make me SCREAM unexpectedly from the extreme pain of a spasm in my ribs, chest, back, My legs and arms have tics constantly and sometimes spasms too. I need to know ...

Rare Chromosome Deletion

By ericwife4life · New reply July 22, 2008
Discussion in Finding emotional support · 10 replies
My son Gage was born on March 8, 2008. We knew he had several issues before he was born. We were currently then living in Hawaii and therefore we were moved to San Diego to deliver him. He was born with ...

anti-amphiphysin antibodies, stiff-person syndrome, breast cancer‏

By RT · New reply July 21, 2008
Discussion in Finding emotional support · 1 reply
My wife was recently diagnosed with Auto antibodies to a 128-kd Synaptic Protein. According to The New England Journal of Medicine there are only Three Women with the Stiff-Man Syndrome and Breast Cancer ...

Has Anyone Fully Recovered From Stiff-Person Syndrome?

By RT · Posted July 21, 2008
Discussion in Finding emotional support · 0 replies
It appears not everyone who has Stiff-Person Syndrome is affected in the same way and some medications work for some and not others. Some have tested positive for GAD 65 Antibodies and others have not ...

Help....

By caletham28 · New reply July 21, 2008
Journal · 8 replies
I finally met with the colorectal surgeon the other day. It was an okay visit nothing great and I did not leave with the feeling that he was the one to help. I then received a phone call from my GI doc ...

HSP

By Khaye · Posted July 21, 2008
Journal · 0 replies
Hi everyone, I am 28 years old single female, also sharing same pains and sad feelings like everyone with regards to HSP. I was 22 years old when i noticed my rashes. I already accepted my fate and still ...

Gene Defect

By sharper · New reply July 20, 2008
Journal · 1 reply
I was born with a Gene mutation which causes fever, arthralgia,conjuntivitis, urticaria, depression, and on and on... This was passed through the paternal side of my family and I have two sisters who ...

Has anyone ever had stiffperson syndrome?

By dee3 · New reply July 20, 2008
Journal · 11 replies
2 yrs ago, i was dianoised with this, but i have gotten to the point where i got all my strength in my legs , but my balance is still off. I can walk around in closed areas, but if there is nothing around ...

What about the treatments for CIDP?

By SueS · New reply July 20, 2008
Discussion in My disease has no treatment · 2 replies
I have been sick and untreated pretty much 10 years. What treatment has been tried the last four years has all been rough going. Is it too late? SueS ...

New members

Inspire others

Together we're better - NORD Rare Disease Support Community

Support your group with badges for your e-mail, website, blog, and more ...

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.