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tazzi

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Ok, i'm under pls/als or something else below.
I had developed glaucoma, now, after no treatment and about 2 months, it's gone.
But, I have had odd feelings of weakness in right leg, as if it will give out but hasn't
yet. This is getting more frequent. Today, I can hardly write with my right hand.
My left forearm has also developed the "weak" feeling in it. Yet, I can lift a book or
something.
I started getting these incredible spasms right before sleep, my leg(s), arm(s),
torso or feet jerk like a bolt of electricity being sent through them.
I almost fell backwards at the Vet's the other day. I was only going to open the
car door.
My Family doc says I do not have MS. But, nobody knows what the blank I have.
My only real blood anomoly is an elevated CK.
 

crystalkk

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Hi tazzi,

Try and hang in there....
What other tests have you had?
Have you been to nuero?

crystalkk
 

tazzi

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thanks crystalkk

yes, i've been to a neuro, actually, I had a *team* of sorts. and another neuro also.
i realize nobody can diagnosed you and so it's i suppose just venting symtoms here,
but it is a bit frustrating. i'm hangin' in crystal.
i've had tons of tests. they haven't really found much wrong, at least that
stays wrong. i have auto-immune thyroid disease, and i had a scare
of possible hodgkins, but every time i turn up a problem, it goes away, and
they cannot find it again.
my parathyroid was acting up, they thought maybe they found the problem,
but, it's ok now and stayed ok.
my muscle testing apparently was ok, my plasma carnitine was a bit low, and my
acetyl carnitine was close to low.
my emg test showed with one neuro, nerve damage. the other said no damage. go
figure?
i have the one neuro coming up in jan, and endo in feb.
i'm not bad at the moment, just get really really tired and sleep all the time, and
get those *weak* arm, hand, leg symptoms, and occassional leg cramping that is
fairly severe at times.
thanks for your reply, it's really appreciated.
 

keith

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muscle weakness

elevated ck usually means a muscle problem of sorts. my emg showed nerve damage but the neuros believe that it was caused by the severe muscle damage done by myositis. I always have to think to position my body the right way when opening the car door, or I fall backwards like a load of bricks. Falling backwards is the worst!
a muscle biopsy should confirm muscle disease. your docs will probably go that route next. take care and watch your feet.
 

crystalkk

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Hi tazzi,

How are you today,
The problem is with all this nuero stuff, it takes along time fiquiring it out.
IS your thyroid hypo or hyper.
How is your nuero exam -your reflexes, etc
When you say hand weakness do you have atrophy.
How long have you had this symtoms.
Why does your family dr. say you don't have MS, did you have brain mri and spinal tap?

crystalkk
 

ltr

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Keith - so, you have been diagnosed with myositis? If so, which one. I have been diagnosed with polymyositis and we could have tons to talk about!
 

tazzi

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hi crystal

i'm hypothyroid, hashimoto's disease.
well, my family doc says no MS because she see's no sign of it in her mind.
i did have an mri about 7 years ago now, and it was normal. of course, that
was then. no spinal yet. no muscle biopsy yet.
one neuro said she thought i had been poisoned, but by what nobody knows,
and she never looked further into it. kinda weird i thought, although an
intriguing idea.
one crazy internist said i had all kinds of things, but he did entertain a muscle
autoimme problem, but all tests he did showed nothing abnormal.
i have had fluctuating parathyroid hormone, but a specialist i asked in florida
said my symptoms are not related to thyroid/parathyroid at all in his opinion.
so, i see both new endo in feb, and my one neuro in jan. 08.
(thanks crystal, (i work with a really nice person named crystal at one of my jobs).
i'm getting my ck done in a few weeks, and i'm on carnitor, and it seems to be helping
i think.
 

tazzi

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forgot crystal

my symptoms have been for about two years now,
maybe some atrophy but not much. take care.
 

tazzi

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question keith

hi, hope you visit here again,
i was wondering what symptoms you have with the polymyositis.
the one thing i have noticed with muscle, is that my biceps for example, are
very quickly painful, like a burn/pain almost, when doing anything that utilizes
them. it's like i went from lifting a weight and eventually getting that "burn",
to having it immediately. i have the strength but it only lasts briefly it seems,
then i need to recover.
i have had a mildly elevated sed rate, but not much. i seem to show little if any
inflammation anywhere.
anyway, thanks for all the help.
 

tazzi

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CA
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ontario
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london
so far a bit better

ok, so i've been on carnitor for a few months now, and, it seems to be helping.
but not everything. very little shortness of breath, so that's good.
a little more noticeable muscle durability you might say, in that they don't pain
really bad or give out quite so quickly, in repetative situations, but over a certain
weight (not much mind you!), and the burn/pain is instant.
i still drop things as if my mind is disconnecting from the arm, hand, or whatever.
i sometimes drool, hate to admit that one, and every so often fatigue hits in a big
way.
i get massive twitching of muscles and actually, my whole body when trying to sleep.
i sometimes act totally out of character, just seemingly for minutes, it's really weird.
and sometimes it's like i can hardly write my own name or print on paper something.
ck gets checked soon again, it's high typically and with no apparent reason.
it's difficult waiting for appt. with neuro, and wondering what if anything is wrong.
 

vmd

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tazzi:

Yes, I empathize with you. All these symptoms seem to be in control of our bodies. The constant fascics really get to me every once in a while.
 

CindyM

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:-D I have gotten used to having a body with a mind of its own. Gave up ownership and control over it long time ago. LOL. Cindy
 
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