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Journals

PEG Tube placement recovery ?

Rodeogrl02
  • By Rodeogrl02 · Posted November 11, 2009
  • 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 ...

Good days & bad days

KAS2008
  • By KAS2008 · Posted November 9, 2009
  • 2 replies
  • Since Dec of last year I have learned to define my life, literally, in terms of "Good Day", "Bad Day". Lately the bad day's have way out numbered the good days and it gets hard to keep the faith. With ...

Mothersadvocate

mothersadvocate
  • By mothersadvocate · Posted November 9, 2009
  • 1 reply
  • I need help in finding a Dr that is specialized in Tardive dyskinesia. My Mom was given a drug called Metoclopramide/Reglan and now has TD. She was left undiagnosed for 19 months and only recently it ...

Coping with Neurological symptoms

sarahmichelle
  • By sarahmichelle · Posted November 9, 2009
  • 2 replies
  • I am so glad to have found this forum. My illness has turned my life upside down. I'm learning to cope with it and need all the support I can find. Finding this website has helped me not feel so alone ...

TheraSphere Treatment

clkempf
  • By clkempf · Posted November 9, 2009
  • 0 replies
  • Going to Mayo Clinic in Minnesota for TheraSphere treatment to TRY to shrink my 6.7cm tumor in my liver....Has anyone else had this treatment and what were ar are your results??? This is the first major ...

new and not sure where I belong

ember
  • By ember · Posted November 9, 2009
  • 0 replies
  • I was sent here from another forum. I have body wide twitching for 13 years. I see a specialist in movement disorders. I am 52. Tegretol seemed to help, but my white count dropped to low and had to stop ...

Disability

gigglebox
  • By gigglebox · Posted November 7, 2009
  • 17 replies
  • I am so so excited!!! After a year of waiting i got approved. I didn't even get the ususl first denial. I needed the insurance so bad. Now maby i can get to a doc that can be more help. Or will it be ...

a learning curve...

katherine67
  • By katherine67 · Posted November 7, 2009
  • 0 replies
  • so, even though we don't yet have a diagnosis, I'm more and more sure of my belief that my daughter is suffering from Mastocytosis. Tonight we went to the urgent care center because of her coughing and ...

Bowel Obstruction from J-tube?????

Rodeogrl02
  • By Rodeogrl02 · Posted November 6, 2009
  • 9 replies
  • I had a colonoscopy and an endoscopy this past monday (the colon part because of having severe diarrhea for weeks), then before we started the procedure my dr asked if he could add on an endoscopy last ...

My Story

chillray
  • By chillray · Posted November 4, 2009
  • 0 replies
  • DX with POTS 3 years ago. Trying to find underlying cause. POTS doctors are thinking maybe MCAD, based on improvement of symptoms with ant-histamine use. No official tests done yet. Can't find doctor ...

SO excited to share what I have found!

pwrsrg77
  • By pwrsrg77 · Posted November 4, 2009
  • 44 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 ...

ICD, LQT, low potassium

edmar
  • By edmar · Posted November 3, 2009
  • 6 replies
  • I'm a SCA survivor, and i'm lucky to be alive again. I fainted, April 23, 2009, the reason i was rushed to the hospital. I was admitted for 12 days, and after a series of tests and investigation, my doctor ...

To: Pain From: Me

Nina372
  • By Nina372 · Posted November 2, 2009
  • 10 replies
  • To: Pain From: Me Well hello pain, you might not want to hear this but you have out-stayed your welcome here in my body. You are the most annoying, agitating, distracting, way to needy, company that I ...

pots/dysautonomia

Nina372
  • By Nina372 · Posted November 2, 2009
  • 11 replies
  • Does anyone here have experience or knowledge about getting a pace maker for their postural orthostatic tachycardia syndrome (pots ...

parvovirus B19 positive--what does this mean?

stephanie71
  • By stephanie71 · Posted November 2, 2009
  • 2 replies
  • Hello, my name is Stephanie. I was just told by my rheumatologist that I'm positive for parvovirus B19. He said that my exposure was not recent. What exactly does this mean? He said my level was 0.56 ...

Out Damn Spot!

dizzybee
  • By dizzybee · Posted October 31, 2009
  • 6 replies
  • have been having trigeminal neuralgia (fancy word for pain from Hades) since around Sept. 23 -- been to ER twice one shot of dilaudel and next time a shot of morphine. Finally got an MRI -- i basically ...

my oldest and her rnd

senecamom
  • By senecamom · Posted October 31, 2009
  • 0 replies
  • after going thru outpatient therapy our oldest is pain free and has no effects of the rnd. now it's not to say that it won't come back down the road but we are greatful that she is having no problems ...

RND and Yoga

zanypaws
  • By zanypaws · Posted October 31, 2009
  • 1 reply
  • My daughter is 13 and has Reflex Neurovascular Dystrophe. Is there anyone out there with this condition that has had success or not with Yoga? I feel like I'm spinning my wheels ...

inspiration

barbear
  • By barbear · Posted October 31, 2009
  • 0 replies
  • guess I'm hogging this journal thing tonite...as I'm learning to navigate this site..and it will take me a while!..I am truly inspired by the stories I'm reading...I try to put my rare disease in perspective ...

msa of the brain

randy1955
  • By randy1955 · Posted October 31, 2009
  • 1 reply
  • I have msa of the brain I have lost most of all my short term memory and now it's in my long term also my bowels doesn't work any more I have to take a shot every other day to get them to work I have ...

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