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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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Newly Diagnosed....Again.
Why is telling this so hard?
I've been here on this board for months, and was, and still am, at the other site for over a year, you aren't strangers, and yet I feel as though I'm about to jump off a cliff. I'm actually tightening up trying to write this.
Start over.
I was just diagnosed with MS on Monday at the age of 62, 27 1/2 years after I was first told I had it, and about 23 years after I was told I didn't.
The 1st dx was based on sx, time and space, and clinical observation, taking it back was based on my first clear MRI.
Hearing loss (bilateral and for some time now, severe), visual issues, dysphagia, bowels, bladder, weakness,all happened real early on...tingly, electrical, and numb feelings didn't happen till relatively late.
Over the years I've been checked for about every dx in the book, including some off the wall ones this last year, and now, something like 30 years since first symptoms, 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, brain lesions to boot....
This past year, due to odd test results, rule out this and rule out that, has been so bizarre, I often felt I sounded like an internet crank. I think that is why I had trouble starting to write, I felt I lacked credibility....Bizarre? No, that's an understatement.
Anyway, I will start REBIF as soon as my LFTs and pancreatic enzymes return to normal.
An oral Prednisone/IMURAN attack on my liver and pancreas put me in the hospital Fri. through Sun. I am tapering off the Pred. and the Imuran was stopped as soon as my bloodwork came back.
The Imuran was just a stopgap, in an attempt to decrease the number of attacks I was having and to slow down the accumulation of damage that was happening this past year. The Dr. who put me on it was my DR. House, and my angel. I will be forever thankful to her, I only wish she could continue as part of my treatment team.
Well, I don't feel any more credible, but I do feel relieved. Relieved that I don't have to go to Mayo, or Onco's, or have more LPs, or, or, or...at least not for this. I am also relieved that, after 3 days of avoiding it, I finally put words to a thread here, maybe a rambling and not terribly coherent thread, but my, I have MS thread.
Well, that wasn't too bad, reading it may be harder....  
Note: I will probably cut and paste most of this for the other site also, I haven't the energy to try to do another one from scratch. It feels odd, but I mean no disrespect to any of you, or to the other board. It is just a matter of "resource and energy management." 
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tante
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