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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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Last week I saw the rheumie who:
a) referred me to the oncologist (clean cancer bill of health, and
b) had put me on oral prednisone in anticipation of some uglies that it might help, and
c) wasn't going to see me anymore because all rheumatological diseases had been ruled out.
BUT, no-one else had taken over the Prednisone and it didn't fit anything left in the picture so I made an appointment to find out how to taper off.
Well, this Dr. is a bulldog, Dr. House combo, and certainly not putting down my other Dr.s, decided to hang onto me until someone either came up with a specific demyelenating inflammatory disease that could be treated, or decided based on the all of the positive tests and clinical evidence to treat me "presumptively."
In the meantime I have been started on 100 mg per day of Imuran,
an immunesuppressant, because the damage is piling up in me...blood work every 6 weeks. will start the prednisone taper in one week.
Attacks are more frequent, although while on the prednisone not as nightmarish, but I am left each time with worse residuals in terms of lack of function. The hope is that the Imuran will slow down the damage being done to my nerveous system. If it doesn't than a chemo drug will be used.
I am supposedly getting set up for tip to toe MRIs again, but I haven't heard a thing about dates.
Finally, I think it is beginning to truely wear me down although that might be the roids talking. My left eye, and the related trigem. neuropathy sensations around the eye are driving me batty and if I could only get rid of one thing...heal one thing, it would be my L eye...with the severe hearing loss, any reminder of damage to my eyes just scares the plooey out of me.
See, I swore I was going to be short and to the point, but which point....Dr., pain, Sx, Rx, frustration???
I guess I shouldn't whine, at least everyone seems to agree I have a demyelenating disease involving the CNS, so I guess that's the equivelent of beachfront property on limbo island 
 I'm feeling terribly self centered not replying specifically to each of you this week, I am sorry, I am...
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tante
Last edited by tante; 03-19-2008 at 04:20 PM.
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