NORD Rare Disease Support Community

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Please Pray for my mom

By catwoman74 · New reply 11:29 am
Journal · 3 replies
Hey, My mom has surgery yesterday for a prolapsed bladder, & she's having a chest x-ray right now, because her oxygen saturation levels aren't very good-at least not what they'd like to see-I just talked ...

Progression of hyperaldosteronism symptoms

By ghtgillen · New reply 10:42 am
Discussion in Getting a diagnosis · 3 replies
I have been diagnosed with hyperaldosteronism and have undergone all the test up to Adrenal Vein Sampling (AVS). Results show lateralization so surgery (adrenalectomy) is the next recommended course of ...

16p11.2

By melissalynn31 · New reply 10:31 am
Discussion in Getting a diagnosis · 10 replies
Hi my daughter was just diagnoised with 16p11.2 duplication syndrome. They say it's so rare that there is not even a real name for this yet. Ashley has the whole 11.2 gene copied. I was told that deletions ...

spinal cord stimulator

By kathikalo · Posted 10:09 am
Discussion in Getting a diagnosis · 0 replies
I would like to hear from anyone who has had a spinal cord stimulator implanted ...

RSD/CRPS

By inmemoryofjoval2007 · New reply 9:03 am
Discussion in How my disease has changed my life · 6 replies
Hello everyone! I had surgery back in March 2010. Now it seems I may have a new problem as a result (I guess) of that. My treaying doc and the pain management doc he sent me too, believe I may have RSD ...

Growth Hormone from Compounding Pharmacy

By sajwife · New reply 9:02 am
Discussion in Financial issues · 1 reply
Many adults who require growth hormone replacement find their insurance companies won't cover the expense, as it is a specialty drug and many companies will go to the end of the earth not to cover it ...

Larry King features Breakthrough

By 2young4this · Posted 8:05 am
Discussion in Finding emotional support · 0 replies
I was flipping through the channels last night and landed on Larry King on CNN interviewing Tony Robbins and the couple from his first episode of Breakthrough (NBC Tuesday 8pm). It was incredible. The ...

Myofibrillar Myopathy

By 1fixitman · New reply 12:35 am
Journal · 3 replies
Myofibrillar myopathy is a very rare form of Muscular Dystrophy and by itself has different causes and effects. Some people are affected slowly while others are have a rapid onset. Mine started when I ...

"well you look good"

By Nina372 · New reply yesterday at 10:51 pm
Journal · 46 replies
The video explains it all. lol I have created a facebook group for this very reason. Here is a link for it if you have facebook. Its for those of us with chronic illnesses that you cannot see so people ...

New to Site

By sandra_kay · New reply yesterday at 10:35 pm
Journal · 2 replies
Hi Everyone, I'm new to this site. I'm so glad to have found you guys. Found out in eary 90's that I have TMD and after three surgeries was told that I needed total joint replacement. Some autoimmune ...

PS

By sandra_kay · New reply yesterday at 10:29 pm
Journal · 2 replies
Oh yes, thanks to the hospital, I am now in diapers, lost most bladder and bowel control, as well as sex is out because no feeling anymore ...

Chemicals, Immune System and Malabsorption...What is their relationship

By hooked1 · New reply yesterday at 6:16 pm
Discussion in Finding a doctor · 6 replies
I have been very ill over the past two years or so and have lost 55 pounds. The weight loss is due to not being able to eat foods that have any type of fat or animal/fish protein in it. I had my Gall ...

Tarlov Cyst Disease

By Waanama · New reply yesterday at 3:53 pm
Discussion in Getting a diagnosis · 6 replies
Ihave seen thousands of Tarlow cysts and very few are making symptoms. Trere are always another reason for symptoms. Surgery is very seldom used ...

Foods make me sick!

By 2inoklahoma · New reply yesterday at 1:56 pm
Journal · 22 replies
Journal, Today I vow to read all labels myself, even when someone has read it to me. I vow not to eat anything without a label unless it is in the form God made it. If I don't I know that it will trigger ...

channelopothy

By DavidStacey · Posted yesterday at 12:00 pm
Discussion in Getting a diagnosis · 0 replies
My husband started to go to the dr 2 years ago. After rest he will be unable to walk due to weak and stiff leg muscles. He would also feel extreme fatigue and suffer from sever sweating at night. We ended ...

tarlov cysts and parathesia

By missylou · Posted yesterday at 11:35 am
Discussion in Getting a diagnosis · 0 replies
My worst symptoms are numbness, tingling, pain and weakness in my feet. My back pain(s) has responded well to physical therapy. Anyone else out there with TCS who deals mostly with this ...

Polymyalgia Rheumatica

By SAVED · New reply yesterday at 11:29 am
Journal · 26 replies
I need information, please. I am on 40 mg of prednisone a day. Has anyone successfully step down and chosen to come off of it. The disease or prednisone - I had rather suffer the disease than continue ...

Progressively worse symptoms

By Golf · New reply yesterday at 10:08 am
Discussion in Getting a diagnosis · 3 replies
Hi, I'm 27 years old and was until last November in relatively good health. In mid November I started feeling light headed/dizzy for no reason but it didn't concern me too much at the time. About a month ...

help!

By tennmom · New reply yesterday at 8:58 am
Discussion in Getting a diagnosis · 2 replies
I have a seven year old son who has just undergone his second round of scopes and biopsies this year in an attempt to diagnose his medical condition. He has suffered from chronic sinus infections, asthma,pneumonia ...

Isaac syndrome/ sps/ or what?

By makina · New reply yesterday at 8:43 am
Discussion in Getting a diagnosis · 29 replies
I have gone thru many post here and another great support site for Isaac. Fit Isaac or sps. Want to write my symptoms is detail to see if anyone can point towards something being missed. I have been suffering ...

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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.