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Member
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Join Date: Jan 2008
Posts: 151
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Member
Join Date: Jan 2008
Posts: 151
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Ahhhhhh, Cathy, anytime you get on is a good time. 
What are those patches again? I need to make note of them, just in case, and also to remind me that there is a bit more joy in a friend's life. Always a good thing to hold near.
Debbie and Jan, i just get frustrated wishing I could wave a wand over this sometimes seemingly G-d forsaken Limbo Island, dredge up an answer, some peace...at least some Dr. (specialist) who would grab on and shake all symptoms till, well, even then sometimes it is just luck, and, for some, time.
Me? in the hospital for 3 days after Imuran/Prednisone gave me a case of acute pancreatitis (with no pain ???) and through the roof Liver function tests..thought I had Salmonella from cantalope...nausea and diarrhea, for 2 wks.
When I started having an off and on fever from 96.5 to 102.4, vomiting and lost 6 lbs in about 4 days I drove myself, at the rheumies insistance to the ER...in a cold drenching sweat.
IVs, black and blue arms, fixed the nausea and then wouldn't let me eat....sadists... .
Had me in tears 'cause they were talking about keeping me till my counts were down, and I had a long awaited NEURO appt on Monday.
Counts were not down but they let me out since I wasnn't vomiting, and I had blood drawn at PCP 's yesterday, then again on MON..
***New:Counts are down, not normal but down...yay! will check again on Mon.
Now, Neuro visit:
Last weeks check in I said my recent MRI looked different to me....1st brain MRI that looked like anything in about 23 years.
It was different, I have lesions, the only thing I still needed for my Dr. to giuve me a dx. ...and this week I am doing both a "Limbo Check-In," and a "Limbo Check-Out."
I have MS. I start REBIF (My Neuro is aggressive (if liver will allow) as soon as LFTs are back to normal. I met with his MS nurse, who I already knew, got tons of material (on Copaxone also), and started on PROVIGIL yesterday.
No long story now, but my road started w/a sx and clinical time and space dx of MS in 1979...taken back a few years later with 1st normal MRI. Hearing loss (severe bilateal), vision, bowels, bladder, all happened real early on...tingly stuff didn't happen till late.
Every wierd dx in the book, gave up, dd died, life went on, and now, almost 30 years later, through a couple of shear flukes or, as Neuro called them as he rolled his eyes, accidents, I have a diagnosis. O Bands, EPS, symptoms out the ying yang,and now, lesions to boot....
Dh doesnt have to read me my autopsy.
I am relieved....overwhelmed by amt. of info to read, and still sick from the drugs...but so relieved, this past year has been a rapid down hill spiral, maybe the Rebif will help slow it down.
I hope no one else takes this long, but sometimes....
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tante
Last edited by tante; 04-09-2008 at 04:53 PM.
Reason: lack of clarity...aka i was confuseled and change in status
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