RE: Thanks for the welcome and info!

[Guest guest]

Hi

If I haven't welcomed you yet I will now.....

Welcome! I'm Teddi from Oklahoma and

I have had DM for 6 yrs now. If you are

getting the coloring on the eyelids and the

rash it sounds more like DM to me. I also

got a terrible itching. Hope they find out

soon.

Teddi

mailto:teddifromok@...

[Guest guest]

Hi

If I haven't welcomed you yet I will now.....

Welcome! I'm Teddi from Oklahoma and

I have had DM for 6 yrs now. If you are

getting the coloring on the eyelids and the

rash it sounds more like DM to me. I also

got a terrible itching. Hope they find out

soon.

Teddi

mailto:teddifromok@...

[Guest guest]

Hi

If I haven't welcomed you yet I will now.....

Welcome! I'm Teddi from Oklahoma and

I have had DM for 6 yrs now. If you are

getting the coloring on the eyelids and the

rash it sounds more like DM to me. I also

got a terrible itching. Hope they find out

soon.

Teddi

mailto:teddifromok@...

[Guest guest]

Hi ,

Sure sounds like DM to me!!! Even tho your CPKs

aren't high high....they are still above the normal

limits. What's tricor? Another statin??

Everyday is different with a myositis...in my opinion.

There are days I think...not a problem...it's going

away. And then the next day, I'm weak as a kitten.

The rash does the same thing! The way you describe

your rash certainly brings DM to mind.

Try not to worry about the EMG too much...it doesn't

last that long and will be but a memory! And it will

provide good information to your doc! Look at it that

way!

Have a good evening!

Lynn

=====

Hope sweet, walk light, sleep deep, wake bright

__________________________________________________

[Guest guest]

Hi ,

Sure sounds like DM to me!!! Even tho your CPKs

aren't high high....they are still above the normal

limits. What's tricor? Another statin??

Everyday is different with a myositis...in my opinion.

There are days I think...not a problem...it's going

away. And then the next day, I'm weak as a kitten.

The rash does the same thing! The way you describe

your rash certainly brings DM to mind.

Try not to worry about the EMG too much...it doesn't

last that long and will be but a memory! And it will

provide good information to your doc! Look at it that

way!

Have a good evening!

Lynn

=====

Hope sweet, walk light, sleep deep, wake bright

__________________________________________________

[Guest guest]

Hi ,

Sure sounds like DM to me!!! Even tho your CPKs

aren't high high....they are still above the normal

limits. What's tricor? Another statin??

Everyday is different with a myositis...in my opinion.

There are days I think...not a problem...it's going

away. And then the next day, I'm weak as a kitten.

The rash does the same thing! The way you describe

your rash certainly brings DM to mind.

Try not to worry about the EMG too much...it doesn't

last that long and will be but a memory! And it will

provide good information to your doc! Look at it that

way!

Have a good evening!

Lynn

=====

Hope sweet, walk light, sleep deep, wake bright

__________________________________________________

[Guest guest]

Hi ... From all the info you've given us, it appears you have some

kind of neurological disorder, i.e. the numbness, etc. I have DM and with

that disease comes much weakness and varying degrees of pain. You mentioned

your elbows...is the pain in the joint area? My pain is more in the longer

muscles and not so much joint areas. Hang in there, , and let us

know what's going on each step of the way. Annette

Thanks for the welcome and info!

Hi all,

Thanks for the very warm welcome to your group! It is a pleasure to see a

support group actually BE a support group! I used to belong to one

concerning Restless Legs Syndrome and Periodic Limb Movement Disorder, and

there was a LOT of bickering and fighting going on all the time. I guess it

may be expected from 700 plus folks who get very little sleep, but it was

just too much.

It is a pleasure to meet you Dawn, Lynn, , Annette, Melita, Mike B,

and Lem. (in order from the replies) I hope I didn't miss anyone!

I have seen a lot of good information in my short time so far. I really

appreciate it! I am to see a neurologist next week. He may know what's

wrong from my description, or may order the EMG. I have heard that isn't a

very pleasant test, but may be necessary. <sigh> Thanks for the tip about

the MRI before the (possible) muscle biopsy. I would rather they get it

right the first time, as that one doesn't sound pleasant either.

From your descriptions, I am not sure that I have PM or DM. For the past

5 months or so I have had muscle/joint/tendon pain and inflammation, mainly

in both lower arms and elbows. No weakness, except that I don't use them as

much because of the pain. Some days it hurts a lot to use them, some days

not so much. They are always sore in the AM, and sometimes I wake with a

few fingers numb, sometimes the little one and the one next to it, sometimes

the other ones. Sometimes when it is bad I also get deep aches in one

shoulder and both wrists and even in-between some finger joints. I have

felt some strange fleeting weakness in my right leg though, all the sudden

it is weak...then it seems ok. That has only happened several times. There

is also a dusky rash that comes and goes around my eyelids and cheeks

(facial cheeks) LOL Blood tests so far have ruled out RA and Lupus, so PM

or DM are the doc's next guess.

I live in La Honda, which is about 9 miles east of the pacific ocean,

about 45 miles south of SF and about 15 or so miles west of Palo Alto. La

Honda is the Spanish word for " canyon " , so La Honda is a small town in a bit

of a canyon. It is also full of gorgeous redwood trees!

[Guest guest]

Hi, . I agree, this is a wonderful support group and you'll find a

wealth of info. here from these ladies and gents. I'm no Dr. but it sounds to

me like you have DM, especially since you have the rash on your eyelids and

cheeks. I don't find that I suffer so much from weakness as I do pain. My

PTherapist would probably disagree with me because he thought my muscles were

terribly weak, but I think sometimes it's not as noticeable to us. The pain is

very bad, though. You mentioned that you wake up with numb fingers? Are they

swollen? If so, that's why they're numb and that is definately a symptom of

PM/DM. When I was first dx'd., my fingers were the first to be affected. I'm

sure the Neurologist will order an EMG for you and no it's not pleasant, but it

is necessary for a partial diagnosis. The biopsy should confirm the dx. Good

luck to you....

Dawn

wrote:

> Hi all,

> Thanks for the very warm welcome to your group! It is a pleasure to see a

> support group actually BE a support group! I used to belong to one

> concerning Restless Legs Syndrome and Periodic Limb Movement Disorder, and

> there was a LOT of bickering and fighting going on all the time. I guess it

> may be expected from 700 plus folks who get very little sleep, but it was

> just too much.

> It is a pleasure to meet you Dawn, Lynn, , Annette, Melita, Mike B,

> and Lem. (in order from the replies) I hope I didn't miss anyone!

> I have seen a lot of good information in my short time so far. I really

> appreciate it! I am to see a neurologist next week. He may know what's

> wrong from my description, or may order the EMG. I have heard that isn't a

> very pleasant test, but may be necessary. <sigh> Thanks for the tip about

> the MRI before the (possible) muscle biopsy. I would rather they get it

> right the first time, as that one doesn't sound pleasant either.

> From your descriptions, I am not sure that I have PM or DM. For the past

> 5 months or so I have had muscle/joint/tendon pain and inflammation, mainly

> in both lower arms and elbows. No weakness, except that I don't use them as

> much because of the pain. Some days it hurts a lot to use them, some days

> not so much. They are always sore in the AM, and sometimes I wake with a

> few fingers numb, sometimes the little one and the one next to it, sometimes

> the other ones. Sometimes when it is bad I also get deep aches in one

> shoulder and both wrists and even in-between some finger joints. I have

> felt some strange fleeting weakness in my right leg though, all the sudden

> it is weak...then it seems ok. That has only happened several times. There

> is also a dusky rash that comes and goes around my eyelids and cheeks

> (facial cheeks) LOL Blood tests so far have ruled out RA and Lupus, so PM

> or DM are the doc's next guess.

> I live in La Honda, which is about 9 miles east of the pacific ocean,

> about 45 miles south of SF and about 15 or so miles west of Palo Alto. La

> Honda is the Spanish word for " canyon " , so La Honda is a small town in a bit

> of a canyon. It is also full of gorgeous redwood trees!

>

>

>

>

>

[Guest guest]

I'd guess is having peripheral neuropathy.

It's what I have...drives me nuts sometimes. Really

affects your sense of touch. For a while the B-6

seemed to be doing the trick, but now it's back as bad

as ever.

How about MCTD/UCTD?? We are all such mixed Bags!

Lynn

--- Annette Flamand wrote:

> Hi ... From all the info you've given us, it

> appears you have some

> kind of neurological disorder, i.e. the numbness,

> etc. I have DM and with

> that disease comes much weakness and varying degrees

> of pain. You mentioned

> your elbows...is the pain in the joint area? My

> pain is more in the longer

> muscles and not so much joint areas. Hang in there,

> , and let us

> know what's going on each step of the way. Annette

>

> Thanks for the welcome and info!

>

>

> Hi all,

> Thanks for the very warm welcome to your group!

> It is a pleasure to see a

> support group actually BE a support group! I used

> to belong to one

> concerning Restless Legs Syndrome and Periodic Limb

> Movement Disorder, and

> there was a LOT of bickering and fighting going on

> all the time. I guess it

> may be expected from 700 plus folks who get very

> little sleep, but it was

> just too much.

> It is a pleasure to meet you Dawn, Lynn, ,

> Annette, Melita, Mike B,

> and Lem. (in order from the replies) I hope I

> didn't miss anyone!

> I have seen a lot of good information in my short

> time so far. I really

> appreciate it! I am to see a neurologist next week.

> He may know what's

> wrong from my description, or may order the EMG. I

> have heard that isn't a

> very pleasant test, but may be necessary. <sigh>

> Thanks for the tip about

> the MRI before the (possible) muscle biopsy. I

> would rather they get it

> right the first time, as that one doesn't sound

> pleasant either.

> From your descriptions, I am not sure that I have

> PM or DM. For the past

> 5 months or so I have had muscle/joint/tendon pain

> and inflammation, mainly

> in both lower arms and elbows. No weakness, except

> that I don't use them as

> much because of the pain. Some days it hurts a lot

> to use them, some days

> not so much. They are always sore in the AM, and

> sometimes I wake with a

> few fingers numb, sometimes the little one and the

> one next to it, sometimes

> the other ones. Sometimes when it is bad I also get

> deep aches in one

> shoulder and both wrists and even in-between some

> finger joints. I have

> felt some strange fleeting weakness in my right leg

> though, all the sudden

> it is weak...then it seems ok. That has only

> happened several times. There

> is also a dusky rash that comes and goes around my

> eyelids and cheeks

> (facial cheeks) LOL Blood tests so far have ruled

> out RA and Lupus, so PM

> or DM are the doc's next guess.

> I live in La Honda, which is about 9 miles east of

> the pacific ocean,

> about 45 miles south of SF and about 15 or so miles

> west of Palo Alto. La

> Honda is the Spanish word for " canyon " , so La Honda

> is a small town in a bit

> of a canyon. It is also full of gorgeous redwood

> trees!

>

>

>

>

>

>