The NORD Rare Disease Support Community connects patients, families, friends and caregivers for support and inspiration... More about this group
All new and active discussions & journals
SO excited to share what I have found!
- By pwrsrg77 · New reply 5:53 pm
- Journal · 41 replies
- I have received TONS of wonderful support from this amazing community of people just like myself. All that struggle with debilitating symptoms, wrong diagnosis, less than quality doctors etc... I wish ...
7 year old daughters 'medical mystery'
- By fairymum · New reply 5:44 pm
- Journal · 28 replies
- I really don't even know where to start. I am new to this site and am desparately searching for answers - maybe someone out there will read this and have information to benefit us. I will start from the ...
Isaac's syndrome
- By Lynn2 · New reply 5:34 pm
- Discussion 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 ...
Neuromyotonia/Isaac's disease
- By leapgirl068 · New reply 5:26 pm
- Journal · 1 reply
- Hello. My daughter is 12 and is currently being tested for Isaacs. I have read through many of the threads here and seem to have many of the symptoms you all have described. I am beside myself right now ...
What do you do when the dr. says we have done all we can
- By pinhead2009 · New reply 5:07 pm
- Discussion 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 ...
Oooh the frustration!!
- By InSynchope · Posted 4:47 pm
- Journal · 0 replies
- I am really getting fed up with ignorant doctors who don't know anything about POTS! Anybody know a good autonomic specialist who accepts tricare? I am truely desperate to feel better, I can hardly function ...
dont know what wrong with me
- By madmich · New reply 2:22 pm
- Discussion 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 ...
finally a small glimmer of hope!
- By dizzybee · New reply 1:29 pm
- Journal · 6 replies
- went to new neurologist monday -- he specializes in vascular issues. after talking w/me & hubster, and doing all the neuro tests, he went out to review my pictures. he came back with a very puzzled look ...
Getting Diagnosis with Pancreatitis
- By ReeAnn · New reply 1:14 pm
- Discussion 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 ...
Arachnoid cysts and Arnold Chiari syndrome
- By Stefanija · New reply 11:51 am
- Journal · 10 replies
- My two year old son was just diagnosed last week with both of these. I am looking to meet others who has these or has a child who has these. I would like to find out more information and possibly hope ...
Stiff Persons Syndrome
- By DebW · New reply 11:47 am
- Journal · 9 replies
- It has taken 8 months, 100 tubes of blood and enough testing that I probably glow in the dark but finally have a diagnosis. Now it is finding how to take the memory of who you were and fill the empty ...
Help me to get a diagnosis please I'm begging
- By KathrynArmstrong · New reply 11:36 am
- Discussion 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
- Discussion 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
- Discussion 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
- Discussion 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
- Discussion 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 ...
PEG Tube placement recovery ?
- By Rodeogrl02 · New reply 10:22 am
- Journal · 13 replies
- I have a J-tube in place directly into my jejunum of my intestine (that was a huge hastle and required major surgery & exploratory anyways) Now on tuesday they are going to put a peg tube in (or g-tube ...
"You Can't Have That or You'd Be Dead By Now!"
- By caringcounterparts · New reply 9:43 am
- Discussion 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
- Discussion 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
- Discussion 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 ...
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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.