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Getting a diagnosis
With rare diseases, this can be a lengthy and frustrating process. Was it for you?
Help, my daughter has Periodic Fever Syndrome
- By AnnaLeeR · New reply 8:11 pm
- 14 replies
- I need help!!! My daughter, two months ago was diagnost with Periodic Fever Syndrome, however they are still trying to determine which form. They believe it could be any of the 7 hereditary forms, or ...
Isaac's syndrome
- By Lynn2 · New reply 5:34 pm
- 1163 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 ...
dont know what wrong with me
- By madmich · New reply 2:22 pm
- 3 replies
- i was diagnosed wit addision disease 4 months ago,now my endocrinolofist says hez noth sure that what i have, i have no symptoms except that my adrenal gland was not producing cortisol.i have now to get ...
Getting Diagnosis with Pancreatitis
- By ReeAnn · New reply 1:14 pm
- 2 replies
- I have Chronic Pancreatitis and it has literally taken me decades to get diagnosed! Many others I know with this disease also have had problems getting a true diagnosis. If you expereince extreme pain ...
Help me to get a diagnosis please I'm begging
- By KathrynArmstrong · New reply 11:36 am
- 11 replies
- My symptoms are upper back and shoulder pain, pain radiating from my armpit to my nipple, leakage from my nipple, severe tiredness, loss of appetite, I have had 2 episodes where it felt like mini strokes ...
Does hydrocephalus cause headaches or what?
- By gigglebox · New reply 11:02 am
- 6 replies
- So I have been having headaches for almost a year now and am getting nowhere with the docs. have had a ct and an mri. Both showed 20mm arachnoid cyst in postetior fossa and a sebaceous syst and hydrocephalus ...
Painful movable nodules or lumps
- By jhewels2 · New reply 10:35 am
- 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 ...
"You Can't Have That or You'd Be Dead By Now!"
- By caringcounterparts · New reply 9:43 am
- 99 replies
- For a little bit of fun (I figured we could use it) I thought I'd start a collection of ridiculous comments from doctors that we've all received as we tried to get a diagnosis. I'll kick off the list ...
They say I shouldn't have side effects but how would they know?
- By ttlouise · New reply 6:06 am
- 17 replies
- They have never been on this drug so how would they know how it feels?! I have been on IV vancomyacin for weeks now and they said it shouldn't bother me at all. I ache all over in every muscle and joint ...
PFAPA
- By danitorgersen · New reply yesterday at 6:51 pm
- 12 replies
- does anyone know any information about the PFAPA (periodic fever, aphthous stomatitis, pharyngitis, cervical adenitis)?? Or is anyone dealing with this syndrom with one of there kids?? PLEASE HELP ...
how much longer will it take..........
- By bumkin · New reply yesterday at 6:17 pm
- 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 ...
anhidrosis and a raft of other oddities
- By Nan · New reply yesterday at 4:10 pm
- 39 replies
- My 19 year old daughter cannot sweat - nor has she since birth. She tires easily and has unexplained fevers and aches and pains in her joints that come and go in clusters. We've been to every "ist" (specialist ...
diploidy triploidy
- By jeanette83 · Posted yesterday at 11:26 am
- 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 ...
Kearn-Sayre Syndrome (KSS)
- By zellybelly · New reply yesterday at 7:42 am
- 14 replies
- My little brother was just diagnosed with Kearn-Sayre Syndrome which is a genetic mitochondrial disease. He is currently experiencing the opthalmaplegia, retinal pigmentation, has had muscle wasting since ...
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 ...
Cramp Fasciculation Syndrome
- By Griff · New reply November 17, 2009
- 85 replies
- For two years I have been having electric shocks in my arms and hands, muscle twitches all over, and excruciating stabbing pains in my thighs and calves. This week I was finally diagnosed with Cramp Fasciculation ...
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 ...
