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Getting a diagnosis
With rare diseases, this can be a lengthy and frustrating process. Was it for you?
Hirschprung's Disease
- By emt1987 · New reply November 18, 2009
- 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 ...
How do you keep from giving up
- By QAZPL · New reply November 16, 2009
- 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 ...
Masto testing.... process?
- By katherine67 · New reply November 16, 2009
- 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 ...
* years H.S.P free? I have a question
- By woman · New reply November 15, 2009
- 3 replies
- Does anyone on here know some of the AFTER effect's of H.S.P & what they may consist of? My daughter has been H.S.P free for 8 yrears and the Doctor said she would battle acne (maybe) from the chemo ...
fed up
- By madmich · Posted November 15, 2009
- 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 ...
National Undiagnosed Diseases Registry
- By turtle102301 · New reply November 14, 2009
- 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 ...
Dr Long...FGI
- By catluvver444 · New reply November 14, 2009
- 15 replies
- I am seeing Dr Long for FGI/. Some have said it does not help AND makes fututre surgeries worse > Comments ? Thank you all ...
Always One More Test....
- By adriennebeth1 · Posted November 14, 2009
- 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
- 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 ...
Could you help me?
- By jbird · New reply November 13, 2009
- 4 replies
- Hi everyone! I think I may have Isaac's syndrome or something like it. It started with tremors then it went to twitches all over my body, yes my calves have a lot of twitches but get them anywhere. The ...
metaphyseal chondrodysplasia type schmid
- By emmawilkins · New reply November 13, 2009
- 8 replies
- Hello all, i am a new member and am not sure if a discussion has been set up before for metaphyseal chondrodysplasia. But my nephew who is 5 years old has been diagnosed with MCDS and thats as far as ...
Familial Mediterranean Fever Disease
- By kristin26 · New reply November 13, 2009
- 40 replies
- Is there any one that has this Disease? I Just found out i have it on june 17th and its very rare! I feel so alone. I hope i can find someone who has the same Disease so i understand what im going through ...
What Do You DO To Help Cope With Your Dx.
- By jhewels · New reply November 12, 2009
- 11 replies
- I fight each day to keep my life as normal as possible some days I may not try at all. I don't want to stop being included in things but I don't want them to expect be to do everything also. I don't want ...
Mold
- By nikky · Posted November 12, 2009
- 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 ...
Cutis Laxa?
- By damesbond · New reply November 12, 2009
- 6 replies
- I wish to share my full story, in hopes that a medical professional might read it, or someone who recognizes the symptoms. In DEC 99, I felt a pulsating sensation beside my left shoulder blade. Doc kept ...
waiting for results - any advice?
- By waitinggame · New reply November 12, 2009
- 2 replies
- Hi, Last May I experienced sudden weight gain within a few days coupled with very itchy eyes and tingling itching all over my body. My friend who is also a naturopathic doctor immediately suspected higher ...
Differences Between Tests?
- By dianes123 · New reply November 11, 2009
- 2 replies
- Can someone tell me the difference between a Pet-Scan and a Spect-Scan? Thanks for any info, Diane ...
Autoimmune diseases
- By thebrick · New reply November 10, 2009
- 9 replies
- Some of the hardest diseases to properly diagnosis are autoimmune diseases. Having five of these diseases, I have also been through year after year of misdiagnosis. In the intrim I have started a non-profit ...
looking for those with rnd
- By softballgirl · Posted November 9, 2009
- 0 replies
- I'm looking for anyone with rnd i'm still new to it so i don't know much about it anybody know some information ...
Masto symptoms.. hot skin but no fever?
- By katherine67 · New reply November 9, 2009
- 8 replies
- I'm working on getting a diagnosis for my 3yo daughter, Hannah. One of the things I think I'm noticing with her is that she feels very hot during a flare, but sometimes shows no fever (or it fluctuates ...
