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eosinophilic
- By shan789 · New reply 6:08 am
- Journal · 21 replies
- Jake is currently being treated for this and I want to find out as much as possible about this disease. He is taking pulimcort slurry. 1 vial of pulimcort mixed with 5 packets of splenda ...
hypospadias patient
- By dazy · New reply 5:27 am
- Discussion in Financial issues · 7 replies
- Hi i m 30yr old guys.i need help to did the surgery for hypospadias. i have insurence also but its a conginital desease so no insurence cover it and its a complex surgery so it cost around 2000US$. can ...
Natural Killer Cell Deficiency
- By Tamyra · New reply 4:53 am
- Discussion in My disease has no treatment · 1 reply
- I haven't been able to find another Adult that has Natural Killer Cell Deficiency. I was hoping someone would find me ...
Lifeboat Perspective
- By Betty-Oops · New reply 2:50 am
- Journal · 2 replies
- I have Stiff Person Syndrome, SPS. I have been in other forums where the focus is SPS only, helpful to understand the mechanics of the syndrome. All difficult diagnoses have their own individual recipe ...
central pontine myelinolysis
- By bitsofglass · New reply yesterday at 11:18 pm
- Discussion in My disease has no treatment · 151 replies
- I don't have this disease, but my 88 year old father is currently being tested for this. He was driving and his mind was sharp until April 13 when he was hospitalized for low sodium. When he came home ...
"HYPOKALEMIA OR LOW POTASSIUM"
- By mandyblue · New reply yesterday at 10:38 pm
- Journal · 14 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 ...
How I Found Out I had Crest Syndrome/Disease
- By CrestLady · Posted yesterday at 6:46 pm
- Journal · 0 replies
- After being misdiagnosed by one doctor as having rheumatoid arthritis, I found out fr. another rheumatologist that I didn't have RA. I have Crest, specifically three of the five symptoms. I was so glad ...
Crest Syndrome
- By CrestLady · New reply yesterday at 6:14 pm
- Journal · 3 replies
- The first rheumatologist I saw diagnosed me incorrectly as having rheumatoid arthritis. The next rheumatologist I saw realized that I have Crest Syndrome, specifically three of the five indicators of ...
Brain Lesions
- By BWR · New reply yesterday at 5:57 pm
- Journal · 6 replies
- Hi everyone, My daughter started experiencing severe headaches about two years ago. We took her for CT's and MRI's which indicated she had some large masses of something on her brain. Doctors ruled out ...
Solo Walking - Out there - SPS friendly?
- By Betty-Oops · New reply yesterday at 4:32 pm
- Journal · 17 replies
- I posted yesterday about my wistful thinking about walking. Thinking is better if followed by postive action, so... I want to walk my new neighborhood, but SPS symptoms of agoraphopia, heightened startle ...
medical insurance help
- By kimikiwi1987 · New reply yesterday at 4:32 pm
- Journal · 5 replies
- okay im 21 and im on welfare for my medical and if i work and make over 200 dollars a month they will take me off of my medical. so is there any medical insurance out there that doesnt cost an arm and ...
It's Cost Me My Job, Insurance, Part Of My Sanity, And Still Undiagnosed
- By lf325 · New reply yesterday at 2:42 pm
- Discussion in Getting a diagnosis · 25 replies
- I have had a chronic condition for over a year and am still undiagnosed. My symptoms include fatigue, nausea, occasional vomiting, headaches, changes in bowel, reoccurring flu, and a constant thirst ...
Did you attend the conference? Why? or Why not?
- By joyceg98 · New reply yesterday at 2:40 pm
- Journal · 1 reply
- Let's talk about the pros and cons of attending a patient conference. What are the benefits? or what kept you away? We would like to learn, so that we can serve you better. http://bit.ly/14wRzy The radio ...
Alone you'll self destruct
- By FridayThe13th · New reply yesterday at 2:30 pm
- Journal · 16 replies
- I've taken a bit of time looking through other people's journals on here today. There's hope, love, and families who've been made stronger because if nothing else is shared they share an illness. Sad ...
Heading to Maryland Sunday and Hare Krishna
- By FridayThe13th · New reply yesterday at 1:22 pm
- Journal · 1 reply
- It's almost that time. Time to go get this over with. One more day at work then the infamous "VHL Vacation" I just keep reminding myself..."It is what it is". I stopped the other day to think about it ...
happy 4th of July
- By steviemac · Posted yesterday at 12:31 pm
- Journal · 0 replies
- I want everyone to be nice to others like, opening a door, or let another driver through....Just try to be a good person to all that you meet...Just say hi, or have a great nite...And make sure your animals ...
Surgerey delayed
- By looselinks · New reply yesterday at 9:06 am
- Journal · 10 replies
- Thursday, I was scheduled for complete spine fusion from S 1 to T=7. My pre=op hemoglobin level was only 7, and my surgeon won't operate until it is at least 12. I've never had anemia, but with Ehlers-Danlos ...
And if that wasn't enough
- By Bikrbarb · New reply July 2, 2009
- Journal · 9 replies
- Few people seem to remember that in addition to trying to get thru day to day, move, get out of bed, think, some sort of pain control, some days even to talk or function is impossible: we still have families ...
Are Others Ignorant ..... or simply uncaring?
- By FLiceman · New reply July 2, 2009
- Journal · 22 replies
- ...... How interesting it can be when I speak to others on why I am not coming in to work today. I work for a very large telecommunications company which has home phone service, and fiber optics television ...
Amyloidosis Support Groups - NEW MEETING K.C.
- By Muriel · Posted July 2, 2009
- Journal · 0 replies
- August 8th. E-mail muriel@finkelsupply.com for details. We are excited to be starting a new group. Watch the website www.amyloidosissupport.com for updates. Muriel Muriel Finkel President AMYLOIDOSIS ...
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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.