My turn to check in with the TM family. I keep procrastinating to introduce
myself because it's so hard to put so much in a capsule. Anyway, here goes:
I was diagnosed with Sjogrens in the late 80's, joined a group in Los Angeles
where I lived to learn and share with others about this autoimmune disorder.
Dry eyes and some fatigue was all I complained about. Others had
complications, like lupus. I didn't. Had to see a rhumatologist on a regular
basis to monitor the Sjogren. No big deal. I retired in 2000 and moved to the
Bay Area to be closer to my son and daughter.
Bought a town house, lived close to San Francisco, a fun social life,
arranging big dinner parties, theater, travel, more time to spend with my
children (grown), in short, looking forward to a fun retirement. Life was
good. I took a fun part time job in S.F., also volunteered in a beautiful
hospital boutique, loved working there. BUT three years ago things happened
(personal problems) that put me under tremendous stress, painful sciatica
followed, had to sell my house, wore myself out worrying, packing and storing
everything, etc., etc.....
I woke up one morning thinking my left leg was asleep. It stayed that way.
I went on line and diagnosed the feeling as peripheral neuropathy. Saw a neuro
who agreed and put me on neurontin, scheduled an MRI and suggested physical
therapy. It didn't help much, felt progressively weaker and more unstable plus
a strange feeling I could never describe, a sort of dizziness without things
going round and round. When I told the rhumatologist that I didn't think I
felt my bowel movements like I used to, she freeked. Told me this was serious,
that I could be paralized (I thought she was joking), gave me a prescription
and a doctor's name, I was to see him right away, and also the neuro. I wasn't
even worried, looked at the prescription: Transverse Myelitis it said, and
cytoxin. I was totally unprepared, didn't even understand that I was going in
for chemo therapy. And I was on 80mg of Predinisone for the sciatica. I feel
so lucky that she knew at once that it was TM.
And so, spinal cord inflammation was checked, but the lesion remains with all
the complications you are all so familiar with. I could walk, but eventually
had to use a cane. I kind of managed, still worked at the hospital, still
cooked a little and did my own housework until I fell on my back twice within
the last 2 months. Didn't break anything but each time I fell, I could tell
that something was very wrong. My legs felt weaker and less stable. I am now
scared to walk through the apartment without holding on to the wall of the
walker. Just making the bed or washing dishes is an ordeal. I can hardly get
into the tub sitting on a chair to bathe. My left leg is throbbing so much I
worry that I'll stop feeling it altogether. When I went to check my mail
yesterday with the cane, just two steps and about 6 yards from my front door, I
didn't think I'd be able to get back in without falling. I was alone and
terrified. I made it somehow. It's progressive as
opposed to what I read from some of you, like being practically paralized
overnight.
The neuro can't do much for me. She asked me last year if I wanted to get
IVIG treatments but wasn't optimistic about the result. That was last year.
The treatment didn't do anything for me. Nothing seems to help.
What caused it? I had a younger cousin who died of MS. Is TM hereditary? I
had breast implants at the age of 40 that were removed without leakage when I
moved to S.F. Was that it? I had flu shots in L.A. when the company I worked
for offered them and more in the hospital where I volunteer. Was that it?
The "ablation" I had in July that landed me in ICU for 5 days because the
surgeon broke a vessel accidentally, did that made my TM worse? Who
knows.....
I keep rationalizing: Reading your histories with complications so much
worse than mine, fills me with shame. How can I complain. I can handle the
pain, it isn't as horrible as the pain some of you describe. TM struck me late
in life compared to most of you. I'm a widow, my children are grownup. I'm
only responsible to myself as opposed to some of you having to raise little
kids. And TM does strike little kids. How awful! I am ashamed to complain.
Please forgive me.
I look forward to reading all your emails.
Regina
