TheBanyanTree: CMT Journal: Rollercoaster

[LLDeMerle]

About ten days ago I had a morning when I felt like I was losing my nerve. A
little Internet can be a dangerous thing, however, knowledge it is better
than ignorance and too many people, including doctors aren't up to speed on
low-profiles diseases and I figure what I need to know I need to find out
for myself.

That Friday morning was a little harrowing for me, emotionally. I felt
fearful and weak.  Alone.  I tried to imagine different scenarios that might
be my future.

The day passed, everyone came home and it all subsided.  As each day passed
and my legs felt reasonably well, considering, and it's not apparent that I
am going to be in a  wheelchair by December 1, I returned to normal.  Well.
You know what I mean.   I read about how well CMT patients can cope, how
mild my case is compared to others (so far) and all was right with the
world..  I then came across an interesting article which is listed meds
which are toxic to people with CMT or other kinds of neurological disease.
I had seen lists of this type, before, in my brief career as a CMT patient,
however, there was nothing in those lists which caught my eye.  This list
was new.  On this list was a medication I had been taking for 6 years, a
medication which, in fact, aggravates  CMT and causes it to progress. Not
coincidentally I think, is the fact that the loss of feeling in my feet and
legs began 6 years ago. In cases where CMT is "activated" by any shock,
trauma,  injury, the flue or medications toxic to neurological diseases, the
bad news is that there is no reversal; no way to recoup the  previous
standard of health the one had enjoyed (or not.) The good news is that if I
had never taken this medication I may have lived my entire life without even
knowing that I had CMT .This is very common, in light of the fact that 1 in
2500 people has CMT, a very undiagnosed and misdiagnosed disease.  

So I felt confident with this new knowledge that without this particular
medication, I may have lived my life with full use of my feet and lags,
logic being that if it took a toxic medication to slow me down, then I
probably have a very mild case. 

I lived on this high for exactly six days. Yesterday morning, I read where a
study has been conducted with workers  exposed to paint and lacquers, and
the resulting nerve damage. Testing showed significant changes in exposed
workers in comparison to those of the control group not exposed to the
toxins.. These parameters were significantly changed in workers with long
length exposure to the toxic agents blah blah blah.  A discussion ensued in
the support group regarding exposure these types of toxins for those of us
who are artists, given that we are already compromised neurologically.
Apparently, exposure to such toxins is believed to accelerate the
progression of CMT. In other words: I won't be breaking open those oil that
I bought recently paints pits and solvents are you'd. I'm sticking with
watercolor. And acrylic.

This rattled me a bit because it's a new factor.  And it seems like there is
a new factor every few days. The newest factor, fresh on the heels of the
previous newsflash, is that all the exercise that we think is strengthening
our ankles and legs and keeping  us going for years to come?  Not so much.
No "feel the burn" for us. Apparently, what happens is that when muscles are
overused or even fatigued, the nerve that goes to that muscle can simply
decide that it's not going to work ever again.  Without even asking! What is
up with that? I mean I thought I was done with surly uncooperativeness as
our older teenagers abandoned the nest and now I find that I have to "walk
on egg shells" around my persnickety legs and feet.
 
Oh well. I was looking for a new hobby anyway.

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