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tazzi

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Joined
Oct 20, 2007
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12
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PALS
Country
CA
State
ontario
City
london
as far as i know, still elevated ck (somewhat elevated).
my muscle pain went out with a vengeance (sore to the touch even), but
seems to be gone.
my cognitive function is way better, like i was in a fog for the last few years.
it's as if, i was attacked by something, and left in this weakened state..i.e.
when i do anything physical, even minor, it is like i just lifted very heavy weights,
and have that feeling after. rest often of a day gets me back to normal.
my fatigue is often massive, but occassionally i am ok for a day or so.
my migraines are virtually gone. but, still this problem as if my muscles have been
devastated by something. often the lightest object causes a huge reaction.
so, i have neuro in a few months, still i have no idea what happened or is happening.
symptoms appeared to at one time be in line with ms, als or some mnd but
nothing is certain. i had a muscle injure itself in my arm, now it's like a tumor is
there, but it isn't. very strange. and i did nothing to injure it.
anyway, that's where i am, hadn't been here for awhile, don't know what to think,
where to go, just wait for neuro appt. i guess.
tazzi.
 

Jamiet

Senior member
Joined
Nov 27, 2006
Messages
616
Reason
Learn about ALS
Country
US
State
Louisiana
City
Carencro
have you been checked for lyme?
 

tazzi

Member
Joined
Oct 20, 2007
Messages
12
Reason
PALS
Country
CA
State
ontario
City
london
no check for lyme

haven't had that one yet...although...they are now talking CFS, FMS, along with neuro
possiblitites, or polymyositis....i had endo today..she thinks another autoimmune or
neuromuscular disease is likely...given all the other tests i've had and my symptoms..
thanks though, i'll mention the lyme...
tazzi
 

Jeliota

Active member
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Jul 3, 2007
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Other
Country
US
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TN
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Knoxville
Hey tazzi,

I don't know your whole story so I'm probably treading across tired ground here (forgive me for that), but there are a lot of substances that can put a body into mild rhabdomyolysis. We hear about statins all the time, but a lot of herbel supplements (like resveratrol), powerful SSRI's and others can actually do it, too. Rhabdo, of course, mimics ALS and sometimes the effects of these drugs/supplements can change your body chemistry to such a degree that your CPK's will remain elevated long after you've stopped taking the offending substance. I have no idea if you take anything at all, but thought you might want to know about that.

Otherwise, keep in mind the CFS can cause serious muscle pain, transient weakness, fatigue, twitching, etc. and often mimics initial symptoms of ALS, but is much more common and benign (if you can really call an untreatable condition that causes weakness, severe pain, fatigue and constant twitching benign, but it sure it benign compared to ALS).

Anyway, despite being too lazy to look up your other posts, I hope there was something in this rambling that will help you a little.

Thanks,

Paul

p.s. If you've ever had liver problems before, you need to be extra careful with any supplements or drugs of any kind.
 

tazzi

Member
Joined
Oct 20, 2007
Messages
12
Reason
PALS
Country
CA
State
ontario
City
london
thanks paul

no liver problems at all.
i do take supplements, they ruled any out as possible causes of any problems, but,
i'm keeping your suggestion in the back of my mind, thank you.

don't worry about being lazy about my posts, there's alot of material around here
one can read.
i appreciate your response.

the endo mentioned CFS as a possibility just the other day. my CK is not massively
high, but it fluctuates and can get to 800 or more. they cannot explain the damage
in my arm. i've had balance problems, dropping things, unexplained pain running from
eye to shoulder, all kinds of weirdness. this is what brought on the neuro workups
and why they thought it was some kind of issue that way.

muddying the waters, one emg from one neuro said nerve damage, another emg from
another neuro said no damage. how can that be, i do not know.

i did have fasiculations in my legs, omg it was horrible pain. but now i haven't had
that in a long time, more than a year. go figure?

so it's a real grab bag of stuff that seems to elude them at this point. i guess that's
what frustrates me, and them i guess.

thanks again.
tazzi
 

MtPockets

Very helpful member
Joined
Jun 1, 2006
Messages
1,528
Reason
PALS
Diagnosis
05/2006
Country
US
State
Ms
City
Gulfport
Hi Tazzi,
My muscle pain is almost completely gone too, but so is the use of my legs where I had the majority of the pain.

Can you still use the area that had the muslce pain?

God Bless
Capt AL
 
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