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Discussions
Ohtahara Syndrome (rare Epilepsy)
- By lethallawgirl · Posted 1:39 am
- In My disease has no treatment · 0 replies
- My son was born with this rare form of Epilepsy, Ohtahara Syndrome, last year. I am wondering since I was diabetic in a previous pregnancy (within a few months too) and not treated in my last pregnancy ...
What do you do when the dr. says we have done all we can
- By pinhead2009 · Posted yesterday at 7:37 pm
- In My disease has no treatment · 4 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 ...
fahrs and chemical toxcity
- By kellyjoe · Posted yesterday at 3:56 pm
- In My disease has no treatment · 0 replies
- looking to talk with others who may have fahrs disease and brain injury from chemicals ...
diploidy triploidy
- By jeanette83 · Posted yesterday at 11:26 am
- In Getting a diagnosis · 0 replies
- ive jst got this diagnoisis for my 16 month old baby girl can anyone help me and share some information on what is the outcome very scared and worriad at the moment shes a very healthy baby no heart lungs ...
how much longer will it take..........
- By bumkin · Posted November 18, 2009
- In Getting a diagnosis · 7 replies
- my heart goes out to you all. my daughter is now three and has had fever episodes from birth . she has had about 30 admissions some lasting 9 days. she has had utis and has scarring of both kidneys. she ...
How To Pay For surgery
- By ilene123 · Posted November 18, 2009
- In Financial issues · 2 replies
- There are so many like myself that find themselves unable to pay for surgery. I have hyperaldosteronism and need the surgery but cant afford it.I have been out of work in N.C. since dec,2008.Have any ...
Porphyria in Indiana
- By MsLila · Posted November 17, 2009
- In Finding a doctor · 1 reply
- I am currently in the process of searching for a physician in Indianapolis or the central Indiana area with experience managing the care of patients diagnosed with Acute Intermittent Porphyria. Currently ...
Social Security Disability Process
- By tmichaelroche · Posted November 17, 2009
- In Finding emotional support · 1 reply
- 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 ...
Hirschprung's Disease
- By emt1987 · Posted November 17, 2009
- In Getting a diagnosis · 4 replies
- Hello All Anyone out thier have this disease. I am a 22 year old male that was told when i was little i had a disease of the Intestines and would be on Laxitive my whole life till they didnt work no more ...
fed up
- By madmich · Posted November 15, 2009
- In Getting a diagnosis · 0 replies
- has any1 got addisons disease,i was told 4 months ago that i had 2 take hydrocortisol tabs 4 the rest of my life.i started with 20mg in morn &10 mg at night,after seen my speacialist hez not sure i have ...
Painful movable nodules or lumps
- By jhewels2 · Posted November 14, 2009
- In Getting a diagnosis · 1 reply
- If you suffer from pain that causes aches and spreads from thighs to around the knees can come and go, you could have pain over the ribs and feel nodules that hurt movable, disappear and reappear. I have ...
Tarlov Disease--Third Surgery
- By Leabell · Posted November 14, 2009
- In Finding emotional support · 11 replies
- I am just curious if anyone out there has had more than 2 surgeries and if so what does your doctor say about them? I am about to have my third surgery to remove my cyst. It has been three years since ...
Always One More Test....
- By adriennebeth1 · Posted November 14, 2009
- In Getting a diagnosis · 0 replies
- I have suspected cushings disease....with my past history and physical symptoms I could be the poster child.....but its always one more test....or repeat a test...almost all tests come back with high ...
RARE thyroid disorders
- By softee44 · Posted November 13, 2009
- In Getting a diagnosis · 0 replies
- I would love to hear from anyone who has been without their thyroid gland for at least 5 yrs. I was born w/o mine and recently discovered in a previous CT scan that I have a tiny amt of 'lingual tissue ...
Jansen Metaphyseal Chondrodysplasia
- By littleLevi · Posted November 13, 2009
- In My disease has no treatment · 0 replies
- If you know someone with JMC I would love to share the little information I have ...
SPS and Spastic Bowel?
- By Tinman · Posted November 12, 2009
- In Finding emotional support · 13 replies
- Hello to all. This is specifically for those with Stiff Person's Syndrome but I am open to anyone's comments or suggestions. I have had SPS for 15 years as well as several other conditions. In the last ...
Mold
- By nikky · Posted November 12, 2009
- In Getting a diagnosis · 0 replies
- I am looking to find someone that has been diagnosed with an allergic reaction to mold. I have been exposed to mold for several years. I pronounced officially blind in Sept 2009, I have a severe skin ...
National Undiagnosed Diseases Registry
- By turtle102301 · Posted November 12, 2009
- In Getting a diagnosis · 4 replies
- My name is Heather Long and my son, Cal died at the age of 5 from an as yet undiagnosed disease. While Cal was alive, I found that there was no formal way for doctors to communicate with eachother (i.e ...
Masto testing.... process?
- By katherine67 · Posted November 12, 2009
- In Getting a diagnosis · 7 replies
- My daughter has been OFF of all antihistamines for about 3 weeks now. I would like to put her back on one, but due to the lack of concern by the last dermatologist we saw, she refused to run ANY tests ...
How do you keep from giving up
- By QAZPL · Posted November 12, 2009
- In Getting a diagnosis · 10 replies
- For 22 years I have been dealing with an undiagnosed disease. I go from dr to dr, have test after test, I watch my quality of life decrease and feel as if I am on my own to manage this disease. I will ...
