NORD Rare Disease Support Community

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Tarlov cyst: new approach

By Camilleberg · New reply 10:01 pm
Discussion in Getting a diagnosis · 79 replies
New approach, new hope ? Here is a slideshow that explains the new and not invasive approach to treat arachnoiditis and tarlov cysts. Of course, as it is made under the medical rules, there is no statistic ...

treatment...

By melissaWheelieCrazy · New reply 7:30 pm
Journal · 3 replies
well now that we know what the hell we are doing (no thanks to CVS) my treatment seems to be working! I have had only teeny tiny hardly noticbly jerks! YIPPIE!!! My love to all ...

My symptoms

By makina · New reply 7:23 pm
Journal · 6 replies
From saclp to soles of my feet Twitching, popcorn like, worm like. Fast or thumps and electrical like. In small single fibers or big areas like whole thigh! Burning under skin, pins and needles, pin pricks ...

3 Mth Post Op MRI from my Tarlov Cyst Surgery

By loisindy · New reply 4:38 pm
Journal · 32 replies
Hello all, I got a call from Dr. Feigenbaum on my cell phone while I was driving home from work yesterday. He said my 3 month post op MRI looks really good and we'll check it again in a few months. I ...

hereditary spherocytosis

By julesjoy · New reply 3:51 pm
Discussion in Finding a doctor · 4 replies
I did have a dr that cared. I am 40 years old and recently diagnosed with this. I have known I had a enlarged spleen for 15 years and nobody ever said anything. That was until 3 years ago when I went ...

Having trouble diagnosing a medical problem?

By TeamInspire · New reply 3:50 pm
Journal · 4 replies
Inspire has been contacted by a daytime talk show seeking people who have a medical issue but no one can figure out what it is. Have you seen every doctor under the sun, but none of them can tell you ...

medical records

By narcats · New reply 3:29 pm
Journal · 7 replies
I find it interesting going though med records- they read like a story without a middle -they read like once a pond a time they lived happily ever after-wheres the middle the importance stuff--the Drs ...

changed my photo

By lvnpeace · New reply 1:37 pm
Journal · 11 replies
I look happier in this one, and I had just been told I had terminal cancer. I was with friends who love me. I am not getting anywhere with the oncologist because he keeps getting false negatives, though ...

Pain

By Lorddenus · New reply 1:12 pm
Journal · 2 replies
How to deal with the pain and live for another day ...

Only time will tell

By Ghoss · New reply 12:59 pm
Journal · 3 replies
I get depressed a lot feeling as though i'm nothing more than GODs joke to the world. I have noone i can really talk to about anything in regardes to my life but especially, when it comes to my illness ...

Myofibrillar Myopathy

By 1fixitman · New reply 10:31 am
Journal · 13 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 ...

Lower lumbar disc disease

By msarmywife · New reply 8:22 am
Discussion in How my disease has changed my life · 8 replies
This post is not about me but about my husband, a 26 yr old soldier. My husband has had back pain and numbness for about 6 months now. About 3 months ago during a PT run he had to stop because of numbness ...

hyperaldosteronism - Inspra Meds

By flatcap · Posted 7:36 am
Discussion in Getting a diagnosis · 0 replies
Hi I have been diagnosed with hyperaldosteronism in the UK. I have been on Inspra 50mg for 6 days and my BP has gone up to 180/120. I was wondering if anyone has taken Inspra and how long it took before ...

Mastocytosis Friends

By 2inoklahoma · New reply 7:26 am
Discussion in How my disease has changed my life · 63 replies
Hey guys! I have searched "Mastocytosis" in this web site and came up with a bunch of you. I have invited you as friends and hope we can all get to know each other. It seems the postings are in a vast ...

Mangosteen for mastocytosis?

By Sick_Chipmunk · New reply yesterday at 10:49 pm
Discussion in How my disease has changed my life · 1 reply
Just curious, but years ago a friend of mine gave me some stuff called Xango. It was this really tasty juice made from the "newly discovered wonder fruit" Mangosteen. I drank the stuff because it tasted ...

Day's almost over!

By Sick_Chipmunk · Posted yesterday at 5:46 pm
Journal · 0 replies
I'm determined to go to the gym today, even though I'm wiped out. I'm still sore from a workout on Monday, and I'm determined to try to work it off. I'll probably break out afterward, as I have been lately ...

Polymyalgia Rheumatica

By kindangel313 · New reply yesterday at 4:29 pm
Discussion in How my disease has changed my life · 4 replies
I have been diagnoised with Polymyalgia Rheumatica and it has reek havoc on my life. My inflammation levels jump so they are continually readjusting the prednisone, which by the way is making me fat ...

Swelling/ leg pain/ fatigue HELP!

By Positivem · New reply yesterday at 4:26 pm
Discussion in Getting a diagnosis · 5 replies
I've been working towards a diagnoses for a little over three years. I'm currently seeing Dr. Angela Baylis and she is an awesome holistic doctor. Over these past couple of years they've found out that ...

Can't walk yet

By lennybenny · New reply yesterday at 4:22 pm
Discussion in How my disease has changed my life · 22 replies
I broke my ankle 3 months ago and was recently diagnosed (process of elimination) with RSDS/CRPS. I still can't walk after the surgery and I am ready to jump off a building because all my life I have ...

chronic pain everywhere

By melsmom · New reply yesterday at 4:20 pm
Discussion in Getting a diagnosis · 27 replies
My daugther is now 17 years old and has had chronic pain for as long as she can remember. It started when she was very young and my response was growing pains, however the pains has never stop. It continues ...

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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.