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I went away to come to Life!!

Billie_Jo
  • By Billie_Jo · New reply yesterday at 2:58 am
  • Journal · 10 replies
  • Hi Everyone.... First, let me apologize for my random absences.... That's why some of you have my email, and even phone to text.... I kind of have a habit of disappearing for a time, then popping back ...

Spherocytosis

Avaddimom
  • By Avaddimom · New reply May 20, 2013
  • Discussion in Getting a diagnosis · 6 replies
  • Hello I am 31 years old and I have spherocytosis. I still have my spleen however as of late it has been swelling a little or maybe a lot (I'm so used to the pain I can't tell anymore). My eyes are very ...

Oculopharyngeal Muscular Dystrophy

ebiggs

Sneddon syndrome

kworkman
  • By kworkman · Posted May 20, 2013
  • Discussion in Getting a diagnosis · 0 replies
  • Has any one had trouble finding a doctor to diagnose and treat Sneddons Sy ndrome. I keep going in circles every doctor I sees tells me to see a different doctor ...

Building community

joyceg98
  • By joyceg98 · Posted May 20, 2013
  • Journal · 0 replies
  • Here's a great list from Robin Martinez of SmartPatients about how YOU can help to build the community. You are already doing most of this, but it's a good reminder of what makes these communities so ...

Another Update On My Life

LucyHeart
  • By LucyHeart · Posted May 20, 2013
  • Journal · 0 replies
  • Hey everyone! Remember my last journal? If you don't, you can find it on my profile. I have been doing great. I have tried lots of different foods and not all tasted good but I have found some new foods ...

Mastocytosis? In need of some help!

Nrdeco
  • By Nrdeco · New reply May 20, 2013
  • Discussion in Getting a diagnosis · 9 replies
  • Hello!! I am new here & was hoping some of you could be of help to me. I am 30 years old and have been having strange episodes for the past 10 years. The doctors in my area don't know what it is & keep ...

AL-ANTIBODY- TRIAL LIVE IN THREE LOCATIONS

Muriel
  • By Muriel · Posted May 20, 2013
  • Journal · 0 replies
  • AL-ANTIBODY- TRIAL LIVE IN THREE LOCATIONS NEOD001 TRIAL NOW LIVE AT THREE LOCATIONS IN USA: See our website www.amyloidosissupport.com near flames on top for locations and for the fact sheet…if you have ...

FAP-TTR-HEREDITARY- TTR TRIALS LIVE - ISIS

Muriel
  • By Muriel · Posted May 20, 2013
  • Journal · 0 replies
  • HEREDITARY- TTR TRIALS LIVE - ISIS http://www.clinicaltrials.gov/ct2/show/N CT01737398?term=ISIS+FAP&rank=1 http://www.amyloidosissupport.com/ISIS_4 20915_final.pdf ISIS TRIAL NOW LIVE AT THREE LOCATIONS ...

A Little Girl With Giant Axons....

runnergirl1
  • By runnergirl1 · Posted May 20, 2013
  • Discussion in My disease has no treatment · 0 replies
  • “When you hear hoof beats, think horses, not zebras.” So goes the mantra of first-year medical students. If a common disease is a horse and a rare disease a zebra, then giant axonal neuropathy (GAN ...

Any one with Sneddons Syndrome

kworkman
  • By kworkman · Posted May 19, 2013
  • Journal · 0 replies
  • I have been going in circles trying to find a doctor comfortable treating Sneddons Syndrome . I live in Md but willing to travel does any one know what Dr diagnosis and treats Kim ...

Hemiplegic Migraines and permanent left vision loss

latisha39
  • By latisha39 · New reply May 19, 2013
  • Journal · 2 replies
  • I have recently been diagnosed with Hemiplegic Migraines. However my doctor can't explain why i have now permanently lost vision in my left eye. When i have migaines it still comes and goes but there ...

Five million

Brian
  • By Brian · New reply May 18, 2013
  • Journal · 205 replies
  • Dear members, Yesterday, Inspire reached a milestone: five million posts written by members! Each of these posts, and the 700 million words they contain, are a simple measure of how much we all do to ...

Be Encouraged...Life isn't over yet!

chaplainstevens
  • By chaplainstevens · New reply May 18, 2013
  • Journal · 9 replies
  • Some days I am in so much pain I just tire of living...but then God will let something happen to remind you you still have work to do. I had a lady that I met in the Psych Hospital last year that was ...

Burning Mouth Syndrome - want to connect with others

thisdogdonthunt
  • By thisdogdonthunt · New reply May 18, 2013
  • Discussion in My disease has no treatment · 5 replies
  • I've posted about this before but now have a 'formal' (if that's really possible with any idiopathic disease) diagnosis of Burning Mouth Syndrome. My mission is to find as much relief as I can as I'm ...

Flu-like Symptoms Caused an Emergency CT Scan and CBC Today.

Jer_
  • By Jer_ · New reply May 18, 2013
  • Journal · 18 replies
  • This morning began in a left inguinal lymph node being a little touchy during a shower. I passed it off for being out in the yard all weekend. However, when I drove to work and got out of the vehicle ...

Hemiplgic Migraines and permanent vision loss in left eye

latisha39
  • By latisha39 · Posted May 18, 2013
  • Discussion in Getting a diagnosis · 0 replies
  • I have recently been diagnosed with Hemiplegic Migraines. However my doctor can't explain why i have now permanently lost vision in my left eye. When i have migaines it still comes and goes but there ...

PT

Rondogg333
  • By Rondogg333 · Posted May 18, 2013
  • Journal · 0 replies
  • I went my first PT since coming home in march. He seems positive he can help with my balance. Yay ...

Unicentric Castleman's Disease

Scattel2z
  • By Scattel2z · New reply May 17, 2013
  • Discussion in Getting a diagnosis · 6 replies
  • I'm a 30 year old male living in California. In 2008 I went to the ER for acute abdominal pain with exploding diarrhea. The abdominal CT scan showed 2 swollen lymph nodes but otherwise normal. In 2011 ...

Introducing our new Gaucher's Disease Support Community

Walter
  • By Walter · Posted May 16, 2013
  • Journal · 0 replies
  • Dear members, Today we launched a new support community focused specifically on Gaucher's disease. If you or someone you care for are affected by Gaucher's, we hope you'll sign up for this new community ...

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