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tazzi

Member
Joined
Oct 20, 2007
Messages
12
Reason
PALS
Country
CA
State
ontario
City
london
well, i've been here before, wonderful people by the way.
so, i had latest neuro exam, follow ups, love the doc.
however, nothing much new. i have read that pain is a real
part of als possibly.
i have muscle pain still, and worse on exertion. it's as if i do
a little, and the next day or same day, it's as if i was pounding
heavy weights at the gym!
ck levels still high, never go down.
i feel weak most days, not some others. massive fatigue sometimes,
ok others.
stress definitely sets off a whole chain of awful events in regards to
fatigue, pain, and cramping.
i get "fasiculations" but i do not think they are visible, but it's how it
feels.
my family doc is afraid we're missing the diagnosed. i love it that she told me
this, but it is worrisome.
i am being tested for a variety of issues, but nothing yet to speak of has
become clear.
i have had mild swallowing problems, and some stumbling and so on, but
i take clonazepam and they say it could just be that stuff, but i don't take
it all the time either.
it is extremely frustrating to be continually wondering what is going on, yet
i do understand the fact they just don't want to jump to a hasty conclusion.
i do notice, glycine and aspartic acid make me have lots of problems.
i have numbness in my toes and worse at night. no diabetes they say, no
neuropathy that can be found. my right shoulder pains the worst and i have
no idea why. i had one arm muscle spontaneously burst and cause damage.
that's the only way i can describe it. what is that all about i don't know.
when i get stressed, my mind goes totally blank. i trip, i drop things.
but, i have not lost much strength, some, but my arms seem pretty pathetic
to me, and i can walk a good distance but i pay for it days later.
anyway, does any of this fit the als mold, in anyone's lay opinion, or should i be
looking elsewhere? i've been relegated to probably having some kind of mnd by
the other specialists but again, no confirmed idea has been put forth, but nobody
sees me now but neuro's.
thanks all, you're great and kind.
tazzi.
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
It is frustrating, Tazzi. I wish there were good answers and I wish they could come sooner.
 
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