I was turned on to this group by a friend several months ago and have been
recieving all of the letters but have not responded myself until now. I have
had a relapse after 2 1/2 years and feel that my experience might now
benefit the group or I might gain some help from some of you.
I had my first "episode" about 10 years ago when I woke up with moderate
numbness from the waist down. I was treated with "Solumedrol?" in the
hospital and Prednisone at home and my numbness disapeared. I was told that
I had MS chracteristics but not officially diagnosed with MS. I did not have
any problems for 8 years when I woke again with numbness, this time on the
left side of my body. I endured the same treatment with the same positive
results and was officially diagnosed with transverse myelitis.
I have been on a low daily dosage of Tegretol for the last 2 1/2 years and
have had no serious symptoms until a few weeks ago. I started experiencing
vision problems. I was having balance problems, double vision, blurry
vision, etc. I also developed an ache between my right ear and my neck. I
thought all of these symptons were flu related until I woke up 2 weeks ago
with numbness fron the midsection down. This numbness was significantly
worse than my previous experiences and is also present in my fingers.
Luckily, none of my attacks included loss of mobility, just severe numbness.
I have had the benefit of my wifes' uncle, a nationally renowned
neurologist, who consults with my local doctor on my treatment. I went back
in the hospital for the 5 day Solumedrol treatment but this time my numbness
didnt go away. I am now home taking the Predisone every other day and at
this writing my condition remains unchanged. The doctors tell me they expect
my numbness to dissipate within the next week or two. I am worried but
cautiously optimistic.
I have also been started on a new drug called Avonex. This is a protein that
is muscularly injected once a week. This drug is supposed to slow the
progression of the disease and hopefully increase the time between attacks.
I have had my first injection and am learning how to give them to myself.
Anyway, I would like to ask the group for some input.
Has anyone had experiences similar to mine?
Any experiences (positive or negative) on recovering from the numbness?
Anyone using the Avonex?
Any questions about my treatment? I would be glad to share info that might
help someone.
Take care.
BAX