My husband got TM about a year and a half ago. It was rapid onset with him
going to ER for what he thought was a heart attack and then quickly losing
feeling and movement. By the end of the day, one leg was paralyzed and
hypersensitive and the other had no feeling, but full movement. His damage
stopped just below his chest.
After reading this list, I realize how lucky he has been. After about a week
of terrible tests, the symptoms began to gradually recede. He spent a week in
rehab learning how to walk again. Then he was off work for about four months.
It has been a year and a half now and he still has plenty of phantom symptoms
to which the doctors take note of and can do nothing about. He can walk, but
is quickly fatigued. He still is missing a lot of feeling and range of
movement in his legs and still has constant pain. He only sweats from the
chest up, so he really has to watch the heat. Like most others on the list,
his nights are filled with twitches and nerve reactions, but medication
helps.
He had Brown Sequard Syndrome as part of his TM, which means each side of the
spine experienced it differently. He had a flu-like virus in the weeks
preceding his onset. He also a few weeks before this happened had our
2-year-old son pounce on his back--but doctors don't think there was a
connection-- who knows.
They did the entire testing thing 2 MRIs, 3 CAT scans, Spinal tap, blood
tests-- you name it and really didn't find anything conclusive. The
neurologists at the University of Washington didn't tell us much about TM, so
this listing is really helpful.
Just this week his bosses grew tired of him still not being able to work full
time and moved him out of his management job into a part-time hourly job. We
don't know if he ever will be able to work full-time, but are grateful for
what he can do. WE are glad he's out of management because high stress makes
his symptoms much, much worse.
His physiatrist wants him to try acupuncture now. Does anyone have any
experience with that?? I think he's going to give it a try. But after all the
testing, he's not excited about seeing more needles.
The whole thing has made us much more aware of making the best of each day
and really appreciating his good days when his pain is low and his energy is
high. We try hard to not focus on what he can't do (bike, hike, long walks,
run with our sons, stay up past 8 p.m. etc.) and be grateful for what he has
regained. I think he still is experiencing improvements, so we stay hopeful.
I wish someone could do something about the pain and constant jabbing
tingling on one side, but short of meds that leave him zombie-like, we
haven't found much.
Anyway, thanks for listening.
Carolyn