Journals

Sorry It Has Been So Long time since my last post 4/16/2014

littlewhitedove35
  • By littlewhitedove35 · Posted yesterday at 11:10 pm
  • 2 replies
  • since my last post I have had 6 feeding tube changes, I got my AFO's , today I got the news that my walking issues my be repairable with back surgery. They are telling me that my back is messing up due ...

"A wake-up call from a young e-patient: 'I need to be heard'”

John2
  • By John2 · Posted April 15, 2014
  • 0 replies
  • From: John Novack, Communications Director, Inspire 4/15/14 Dear members, I am writing to share with you a new guest column in "Scope," the Stanford University School of Medicine's medical blog: "A wake-up ...

stiffperson syndrome

wheelchair-23
  • By wheelchair-23 · Posted April 11, 2014
  • 1 reply
  • I wad diagnosed 4 years ago. I never have s day without pain. I fall the the average of 1-2 Times a week.. I have torn multiple ligaments. I am.in a wheelchair now as to prevent the fall. I get IVIG every ...

stiff person syndrome perm variant support group on facebook?

LaurylThomas
  • By LaurylThomas · Posted March 26, 2014
  • 0 replies
  • Hi guys, I was wondering if anyone has heard of this support group before? I somehow came across it while reading something. I am thinking of signing up, but wanted some input first as I have never been ...

Our second annual report with Stanford Medical School

Brian
  • By Brian · Posted March 19, 2014
  • 0 replies
  • We just finished a brand new special report, “Experts by experience 2014: A compilation of patients’ stories”, in partnership with the Stanford University School of Medicine. It is a 31-page collection ...

Hitting a milestone -- 5,000 photos posted already

John2
  • By John2 · Posted March 18, 2014
  • 0 replies
  • From: John Novack, communications director, Inspire 3/18/14 Dear members, I'm writing to let you know that in a little more than a month, members here have posted more than 5,000 photos. Congratulations ...

The Inspire Q&A: Inspire talks with Don Dizon, MD

John2
  • By John2 · Posted March 14, 2014
  • 12 replies
  • The Inspire Q&A: Inspire talks with Don Dizon, MD Dear members, We at Inspire are pleased to bring you the latest in a series of Q&A interviews with people who are making contributions to helping patients ...

small bowel follow through 6hrs

kim5204
  • By kim5204 · Posted February 26, 2014
  • 6 replies
  • Well my last small bowel follow through a year ago (done through my j tube didn't have to drink it) was 2hours long, had another one today (threw my j tube) was there for 6 hours. He told me to go home ...

IT IS JUST TO LATE

Kaiserslautern
  • By Kaiserslautern · Posted February 23, 2014
  • 16 replies
  • I AM 77 AND HAVE PERIPHERAL NEUROPATY SERIOUS FOR OVER 12 YEARS. I HAVE HAD EVERY TEST POSSABLE, WAS AT THE MAYO CLINIC FOR ONE WEEK. NOW IN THE LAST 2 YEARS A VERY PAINFUL PUDENDAL NERVE, AT MY AGE I ...

Introducing Photos for Inspire

Walter
  • By Walter · Posted February 11, 2014
  • 180 replies
  • Hello everyone, Today at Inspire we’re excited to announce the launch of a new feature, and it’s one that many of you have requested -- the ability to upload photos to Inspire. You can now add photos ...

EKG Abnormality

BehcetsGirl
  • By BehcetsGirl · Posted February 6, 2014
  • 5 replies
  • I saw a Cardiologist today to evaluate my Tachycardia, dizziness, shortness of breath, breathing difficulties, chest pain, etc. He didn't really give me any answers, but he did an EKG. He said the EKG ...

An Antidote for Hypersomnia

JanineE
  • By JanineE · Posted February 4, 2014
  • 1 reply
  • I recently found this study online. I have never heard of this treatment before... although the study is old news. I wonder if anyone else has heard of it? http://news.emory.edu/stories/2012/11/an tidote_for_hypersomnia/campus.html ...

It's been 90 days?

Radar57
  • By Radar57 · Posted January 21, 2014
  • 0 replies
  • Symptoms: Muscle weakness Lethargy Muscle twitching Muscle cramping Depression Fatigue "Dog sitting" heart failure, slow death. Diagnosis: HYPP Hyperkalemic Periodic Paralysis - A "Limited diagnosis for ...

WHERE IS AMYK-DOES ANYONE KNOW!!

LaurylThomas
  • By LaurylThomas · Posted January 12, 2014
  • 0 replies
  • Hi there everyone, I am really concerned, I have been trying to make contact with amy k for months now, witth no luck! I know that her sps has been bad and she was doing ivig annd plasmapherisis. We talkked ...

New infographic: Inspire Rare Disease Health Communities at a Glance

John2
  • By John2 · Posted January 9, 2014
  • 0 replies
  • From: John Novack, Communications Director, Inspire 1/9//13 Dear members, I am writing to share with you a new infographic that Inspire published yesterday: Inspire Rare Disease Health Communities at ...

Pain Relief / Abuse Survivors Please share Wisedom of Holding on!

GizzyMo
  • By GizzyMo · Posted January 3, 2014
  • 3 replies
  • what do you take especially when you are forbidden pain medications of any kind because of an unintentional mild od..I think..next morning I was fine except that it was three days past the original dosage ...

hi everyone, sorry it has been so long 12/29/2013

littlewhitedove35
  • By littlewhitedove35 · Posted December 29, 2013
  • 5 replies
  • I know it has been a long time since my last post, but there has been a lot going on. For starters I had to go through a round of iron infusions this past summer , I have been helping some people through ...

Weird "brain skipping" episodes...

BehcetsGirl
  • By BehcetsGirl · Posted December 19, 2013
  • 21 replies
  • A couple years ago, I experienced a weird episode. I'll try my best to explain it... I was walking through the store with the guy I was dating at the time when I first experienced it. The best way I can ...

TO ANYONE WHO IS NEED OF HELP OR ADVICE

ANGELHEART196988
  • By ANGELHEART196988 · Posted December 11, 2013
  • 1 reply
  • I CREATED THIS INSPIRE ACCOUNT IN HOPES OF HELPING THOSE IN NEED OF HELP OR ADVICE. I HAVE ANXIETY DEPRESSION AND POST DRAMATIC STRESS DISORDER. I HAVE BEEN THROUGH ALOT IN MY LIFE AND I HOPE THAT I CAN ...

Risk Assessment Tool for Estimating Your 10-year Risk of Having a Heart Att

Reruho
  • By Reruho · Posted December 7, 2013
  • 16 replies
  • Finally they have published the Risk Assessment Tool for Estimating Your 10-year Risk of Having a Heart Attack. (http://cvdrisk.nhlbi.nih.gov/calculator .asp) This assessment tool covers the 4th group ...

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