Re: Newly diagnosed with TM

nobeck(AT)garlic.com
Sat, 7 Nov 1998 13:05:19 -0800

Hello and I'm sorry you have TM but you've come to the right place for
support and advice. I have had TM since May of this year but returned to
work in Sept. I am a RN and work in the recovery room. My employer and
co-workers have been supportive and they go out of their way to make things
easier for me, although I never ask them to. Since you're walking, keep
trying to increase your activity a little bit at a time. However, don't let
yourself become overfatigued (is that a word?). That will just set you
back. You may be interested in Gunny's band exercises to help strenghen
your muscles. It is a slow, maddening process but improvement takes time
and you can't hurry it. But you can help it along.

As for pain control, I don't take anything now because I feel better. I
took Tylenol (1000 mg) with Motrin (800 mg) and found it was a great
non-narcotic pain killer. I don't know if you can take those meds, but they
worked for me. Also I saw a chiropracter once a week as well as a massage
therapist and these therapies worked better than the drugs. Even if you
don't like chiropracters, try the massages.

Most importantly, keep positive. I know, I know, hard to do when your body
is treating you this way. This group can help you out there. But I've
found it useful to occasionally allow myself brief episodes of feeling down,
followed by long periods of feeling positive. You're used to helping others
and it's hard to be on the receiving end of caregiving.

Maybe your employer will let you come back to work gradually. See if that's
an option. I started back a few hours a day, every other day. I've
gradually increased the hours I work each day, but am still on an every
other day schedule. Also think about how you can conserve energy at work.
Good luck and let everyone know how you're doing.

Susan

>I was recently diagnosed with TM following an "episode" where I had clonus and
>spasming in my left leg, followed by weakness. I walked into the ER,
>unassisted. Following a CT Scan, (4) MRI's, angiogram, cardiac stress test,
>spinal tap and pulmonary function test, I was diagnosed with TM. I was put on
>3 days of steroids, 1000 cc''s by IV drip. I had several allergic reactions
>to medications , which slowed my progress. I spent 10 days in an acute care
>hospital and was transfered by ambulance to a rehab facility for 2 1/2 weeks,
>where I received PT, OT, Rec Therapy and Clinical psychology follow-up. I
>feel that I am one of the fortunate ones, as I am now ambulating short
>distances (70 feet) with crutches, albeit very slowly. I use a chair in the
>house for Energy Conservation and to access the kitchen. Fatigue, weakness
>and sensory changes in my legs, L>R, are my primary challenges at present. My
>legs feel as though they are freezing from the inside out, and when I walk I
>feel as though I am walking on sponges. The only medicine I have found that
>helps is Neurontin and Baclofen. I also have chest pain that pierces through
>my back from the center of my shoulder blades. I want to get off medication
>(vicodin), but I have not yet been able to find anything that works. Any
>suggeestions? I am currently recieving home health PT and OT, and when the
>fatigue becomes less troublesome I hope to go to out-patient PT. I am
>interested in knowing if there are any other health professionals out there
>with TM that were successfully able to return to manual work. I am a Physical
>Therapist by trade and I am quite concerned over my ability to perform my
>previous occupation at a level that would be acceptable to my co-workers and
>my employer. Any input would be greatly appreciated.- LZ
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