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Medical Forum / Diseases and Disorders / Arthritis / April 2007

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Myositis

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Nel - 02 Apr 2007 23:04 GMT
Hi,
Does anyone in this group have Myositis? I guess I have one of them but
don't know yet which. I had an EMG and Nerve Conduction test and they  came
out alright, but my legs are like rubber when I  walk. They are also black
and blue,(the chins?) even though I don't hit them (my hand are almost as
bad) and I've lost so much muscle mass in the arms and legs.
The Rheumatologist is waiting now to make sure the Lipitor is out of my
system in case that is part of it, but I know there was something wrong
before I was put on Lipitor. I'm on 12mgs of prednisone..Next step is biopsy
on leg, and also maybe an MRI..
Thanks for any answers.....Nel
Squirrely - 02 Apr 2007 23:54 GMT
I don't know about myositis. But from what I have heard I know it is not
fun. So I am wishing you the best Nel.

Signature

Love and Hugs to all
Jo the squirrely one

> Hi,
> Does anyone in this group have Myositis? I guess I have one of them but
[quoted text clipped - 7 lines]
> biopsy on leg, and also maybe an MRI..
> Thanks for any answers.....Nel
Cindy - 03 Apr 2007 04:49 GMT
Lots of prayers. I don't anything about this, but I see that you are truely
have alot of problems...
Hugs Cindy
> Hi,
> Does anyone in this group have Myositis? I guess I have one of them but
[quoted text clipped - 7 lines]
> biopsy on leg, and also maybe an MRI..
> Thanks for any answers.....Nel
Nel - 03 Apr 2007 20:13 GMT
Thanks for your answers. Squirrely and Cindy...
Thanks also for the prayers, and hugs Cindy.
 Nel

> Lots of prayers. I don't anything about this, but I see that you are
> truely have alot of problems...
[quoted text clipped - 10 lines]
>> biopsy on leg, and also maybe an MRI..
>> Thanks for any answers.....Nel
Judy Bay - 04 Apr 2007 04:26 GMT
I've been diagnosed with Polymyositis. Seems it's one of the Muscular
Dystrophies. I'm on Cellcept amd Methotrexate.

The MDAA website has information about this.

With me, it's one of those "you don't look sick" things, but my muscles are
too weak to do a lot of things I used to.

> Hi,
> Does anyone in this group have Myositis? I guess I have one of them but
[quoted text clipped - 7 lines]
> biopsy on leg, and also maybe an MRI..
> Thanks for any answers.....Nel
Harvey R. Stone - 04 Apr 2007 14:11 GMT
> I've been diagnosed with Polymyositis. Seems it's one of the Muscular
> Dystrophies. I'm on Cellcept amd Methotrexate.
[quoted text clipped - 3 lines]
> With me, it's one of those "you don't look sick" things, but my muscles
> are too weak to do a lot of things I used to.

I have put up with that kind of thinking for over 30 years but I only have
RA. I do have a neighbor that helps me when I get in a jam who still has
shoulders like I used to have and likes to help out.   I gave him two of my
cool pack containers from Enbrel shipments which caused a land slide with
other neighbors who wanted one too which was OKkk because I had plenty of
them getting in the way in the garage.
Harv
Judy Bay - 04 Apr 2007 21:33 GMT
Yeah, it's hard for people to realize we can't reach the closet rod any
more, or gargle standing up, or reach the top of the door (where I used to
keep the yardsticks). I could go on and on...

>> I've been diagnosed with Polymyositis. Seems it's one of the Muscular
>> Dystrophies. I'm on Cellcept amd Methotrexate.
[quoted text clipped - 11 lines]
> plenty of them getting in the way in the garage.
> Harv
DaKittster - 05 Apr 2007 07:36 GMT
>Yeah, it's hard for people to realize we can't reach the closet rod any
>more, or gargle standing up, or reach the top of the door (where I used to
>keep the yardsticks). I could go on and on...

Yup!  My first RD said I had one of those "no sympathy" diseases....now I
know what he means.  I look, talk, and act perfectly normal when I'm not in
extreme flares, so people don't understand why I'm permanently disabled.
If they could see the x-rays of my lungs, joints and stuff, they'd probably
blanch, but who has the time and patience to stop and explain all that to
strangers?

My biggest pet peeve has become the "handicapped" stall in the public
ladies restrooms.  It's so important that I use it because I can't get up
and down without something to hang onto, such as the rails they provide,
otherwise I tear something in my knees or ankles.  But then I walk into or
out of the stall like any normal, healthy woman, so I have to put up with
the sneering stares from other women who think I'm abusing a privilege.
One of these days one of them is gonna say something snide, and I'll whip
out the emergency medical info sheet I have to carry and let them read it.

Then again, that's all such wasted energy, who can be bothered with dealing
with ignorant and/or insensitive people?  So I try to let it slide off me
as much as possible, because I have better things in life to do that I need
that energy for, you betcha!  Heh, but sometimes ..... I'm just soooooo
tempted to whap a few of those gals upside the head! <wry grin>

--
LadyKitt

"Life is not a journey to the grave with the intention
of arriving safely in a pretty and well preserved body,
but rather to slide in broadside, thoroughly used up,
totally worn out, and proclaiming: WOW...WHAT A RIDE!!!"
Nel - 04 Apr 2007 21:21 GMT
Thanks for your answers,
 Sure hope the Rheumatologist will give me something besides the
prednisone, I tired of a fat face, and bruises and it doesn't seem to be
doing any good anyway. I only take 12 mgs. but would love to get off of
it...bad for the eyes and everything...
Thanks again...Nel

> I've been diagnosed with Polymyositis. Seems it's one of the Muscular
> Dystrophies. I'm on Cellcept amd Methotrexate.
[quoted text clipped - 15 lines]
>> biopsy on leg, and also maybe an MRI..
>> Thanks for any answers.....Nel
DaKittster - 05 Apr 2007 07:41 GMT
>Hi,
> Does anyone in this group have Myositis? I guess I have one of them but
[quoted text clipped - 7 lines]
>on leg, and also maybe an MRI..
> Thanks for any answers.....Nel

{{{{{{{Nel}}}}}}}}}

No, I don't have that to deal with, and you poor soul it sounds awful!
Hope your doctors find out what's causing it ASAP!

I've been on 10-15 mgs of Prednisone daily for a long time now, down from
30-40 mgs.  Prednisone is the only drug, out of trying just about every one
available for RA, that hasn't failed.  It keeps me going.

But I did have to taper off of it totally for awhile, and after being on it
long term you really must be careful about tapering off it slowly.  My
doctors at that time had me reduce it by 1 mg. monthly until I was off it
totally, because of the danger of renal failure, among other things.  If
you have to go off it make sure that you ask your doctors tons of questions
to make sure they and you are on the same page on what is the best and
safest way to taper off the steroids based on your medical history.
--
LadyKitt

"Life is not a journey to the grave with the intention
of arriving safely in a pretty and well preserved body,
but rather to slide in broadside, thoroughly used up,
totally worn out, and proclaiming: WOW...WHAT A RIDE!!!"
Nel - 05 Apr 2007 23:36 GMT
Thanks again guys.....Nel

>>Hi,
>> Does anyone in this group have Myositis? I guess I have one of them but
[quoted text clipped - 36 lines]
> but rather to slide in broadside, thoroughly used up,
> totally worn out, and proclaiming: WOW...WHAT A RIDE!!!"
 
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