Howdy,
Jackie (rubyjax(AT)teleport.com)
Mon, 14 Dec 1998 18:43:37 -0800
I'm not exactly a newbie, because I joined this list a year or so ago,
but I signed off for awhile. My e-mail address has changed from
SJHANAN(AT)E-Z.NET to the above RubyJax one. My bio is in the ARCHIVES
under the old address. But, I'll update.........
The reason I signed off then was because it was being debated by the
Dr.'s whether I had MS or TM? So I decided to do some research on my
own, and thought I might be back here eventually if it indeed turned out
to be TM.
I started my journey 17 years [I was 31] ago with my first attack of
TM. I didn't know what it was then, and MS was suspected. I was sent
home after 10 days in the hosp. with almost all my functions working
okay, except my rt. hand/arm/shoulder. I had residual disability,
numbness, pain and swelling. I could walk on my own, and I was told I
was to learn to live with the other as there was nothing they could do.
I kept going back to the Dr.'s every few years, especially when it
seemed like I was getting worse to try to get something definitive
diagnosed. Finally in 1994 a lesion showed up on a cervical MRI. Before
that no one did a cervical spine MRI on me. I was told then it was
definate MS. I had trouble with the MS dx because only 1 lesion showed
up in the C5-C7. So I pressed to have more MRI's. Then to complicate
matters even more, 2 MRI's ago the lesion disappeared, and I was told I
didn't have MS or TM. Even tho I progressed to having other symptoms
show up, foot drop, spasticity, bowel problems, hypersensory and
reflexes, LOTS of pain, numbness, fatigue, sleep apnea, vibrating and
spasms. So, here I was after all this time back to square one.
Supposedly no lesion, no DX. In reality BAD BAD MRI..........Lesion was
there all the time.
Recently I changed Dr.'s, and insurance, and have started another round
of MRI's, blood tests, etc. up at the Oregon Health Science U., and
after 3 mo's of having full spine films, 16 blood tests, now I've got
another DX of Relasping/Remitting TM this time.
My neuro explained TM to me and said it isn't exactly progressing, but
because they think there is a viral component to it, then everytime the
Virus is attivated, the symptoms I already have flare up. But, I have
symptoms now that I didn't have when I first had the first attack, and
some I had in the beginning I don't have now. Maybe with each flare up
it affects a different area. I don't really understand all of it yet,
but I know I am worse today then I was 17 years ago. She lead me to
believe that the Virus lays dormant, and when something triggers it, it
causes inflammation and more damage.
Does that mean I'll always have this virus in me? I mean I feel sick ALL
the time now. Like I'm always coming down with something, but it doesn't
quite take hold, just enough to make you feel really really crummy all
the time.
So, it's good to be back, I recognize a few names, maybe I'll be
remembered too. :D
Sincerely, Jackie