>Anyway, I'm one of the lucky ones. I can still walk, although
>looking back at those first 6 months I wonder how I did it. I
>continue to see a chiropractor and, contrary to the medical doctors,
>it has been beneficial. I have improved a lot, but I'm still pretty
>continually numb from the knees down. I read where a common symptom
>of TM is a tight banding around the rib cage. I get that sensation
>around my knees and ankles, occasionally at hip/waist level. I
>overdid it a couple of weeks ago and had a flare-up which affected
>bladder/bowel control somewhat. I have a hard time explaining to
>people that my limbs can go from "normal" numb to "really" numb and
>back again a number of times throughout the day. And the really,
>really hard part is dealing with people's lack of understanding when
>they see someone who "appears" to walk fairly normally (I work hard
>every single day in order to do that) but can't go very fast or needs
>help going down stairs. Aaaargh!
>
>I have questions, which is what prompted me to subscribe to the TMIC
>list. I've been reading the e-mail regularly, but have been shy to
>step forth. However, I need some of your expertise!
>
> First, as I said, I've had this for just over a year now. Can I
> expect to get any better or is this it? I seem to have not made any
> progress in the last several months. I think I need some emotional
> help if this is 'it.'
>
> Second, is it normal to slide in and out of "normal" numb and "worse"
> numb and back again?
>
> Third, numb is sometimes accompanied by various pain, from achiness
> in my spine to prickly needles in my feet, none of which is too
> severe. For that reason I don't wish to take a medication the doctor
> said he would prescribe. However, has anyone found an OTC product
> that helps the symptoms?
>
> From afar I appreciate all the help and support you all have already
> given me. I'll do my best to support you, too! And I promise I won't
> be so long-winded again!
>
> BTW, has any thought been given to raising money for the Association
> by selling shirts with the new TM logo? I'd be proud to wear one!
>
> Thanks again.
>
> Jane Dahl
> Seattle, Washington
Hi, Jane,
We seem to have a number of folks from Washington state. Welcome! As we
usually say to new folks, we're glad you found us but sorry you had a reason
to. :)
Your case sounds very much like mine.
It seems the most improvement, or most dramatic improvement, is usually in the
first several months to a year, but many people have reported continuing
improvement even after several years. I've had the same, "What if this is it?"
feelings, but try to keep my focus on what I can do rather than what I can't
and to be glad that I can pretty much function normally even though I don't
feel normal. I'm not naturally a look-on-the-bright-side person and have to
make myself think that way and really appreciate the fact that it isn't worse.
I do have a certain amount of numbness all the time -- "normal numb" - that
does get worse at times and then goes back to "normal numb." It doesn't go
away completly and come back, it just varies in intensity and in the area it
affects. Stress and lack of rest seem to affect it, but sometimes I don't know
what causes it -- I think the "mixed messages" the nerves send out after a
spinal problem.
I also would rather avoid prescription medications if possible, although, of
the ones I've tried, Carbamazepine (generic form of Tegretol) seemed to help
the most. Haven't found a OTC med that helps much except Extra Strength
Tylenol. Sometimes rest helps; sometimes going on with what I have to do, even
though I don't want to or feel like it or even know if I can, helps more.
It's hard to know which to do sometimes!
I like the T-shirt idea!
Barbara H.