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Active discussions
Isaac's syndrome
- By Lynn2 · New reply 5:34 pm
- In Getting a diagnosis · 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 ...
What do you do when the dr. says we have done all we can
- By pinhead2009 · New reply 5:07 pm
- In My disease has no treatment · 5 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 ...
dont know what wrong with me
- By madmich · New reply 2:22 pm
- In Getting a diagnosis · 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
- In Getting a diagnosis · 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
- In Getting a diagnosis · 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
- In Getting a diagnosis · 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 ...
Tarlov Disease--Third Surgery
- By Leabell · New reply 10:59 am
- 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 ...
How To Pay For surgery
- By ilene123 · New reply 10:39 am
- 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 ...
Painful movable nodules or lumps
- By jhewels2 · New reply 10:35 am
- 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 ...
"You Can't Have That or You'd Be Dead By Now!"
- By caringcounterparts · New reply 9:43 am
- In Getting a diagnosis · 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 ...
I have Eosinophilic Fasciitis
- By barbear · New reply 9:40 am
- In Finding emotional support · 5 replies
- I wasa diagnosed with Eosiniphilic Fasciitis, a rare auto immune disease, in Oct. of 2008. I've tried several other sites attempting to find others with this, but have had no luck. It would just be so ...
They say I shouldn't have side effects but how would they know?
- By ttlouise · New reply 6:06 am
- In Getting a diagnosis · 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 ...
Diploid Triploid Mosaic Syndrome, or Mosaic Triploidy
- By thejae · New reply 1:49 am
- In Finding emotional support · 7 replies
- In the last few weeks, I've begun searching for moms and dads of children who have been diagnosed with Diploid Triploid Mosaic Syndrome, or Mosaic Triploidy. Right now, there are 17 in the world, that ...
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 ...
PFAPA
- By danitorgersen · New reply yesterday at 6:51 pm
- In Getting a diagnosis · 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
- 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 ...
anhidrosis and a raft of other oddities
- By Nan · New reply yesterday at 4:10 pm
- In Getting a diagnosis · 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 ...
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 ...
Social Security Disability Process
- By tmichaelroche · New reply yesterday at 3:54 pm
- 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 ...
ANYONE OUT THERE?
- By shell3 · New reply yesterday at 11:29 am
- In Finding emotional support · 18 replies
- does anyone out there have MOSAIC TRIPLOIDYsyndrome or care for someone with it? man this is rough... we are just going through a tough time that's all. i am a recent single mother of 3 and a half yr ...
