Re: Muscle involvement?? Elaine or anyone?

[Guest guest]

Terri,

I was RA first, allergies next, Graves third, and now could

possibly be reaching for diabetes (116 glucose, 110 last

year).

My endocrinologist treats all auto-immune maladies, he

regularly sees them together in the same patient.

Do I, a fellow sufferer think you are RA, yes, I think

there's a good possibility. Let's see what Elaine thinks. I

suspect she also has seen the auto-immune diseases run

together.

Elaine Maddox

On Tuesday, September 23, 2003, you wrote

> Hi everyone:

> Have had something strange happening the last week or so. I don't know if

> it's Graves related or not but it is sure a problem for someone who makes

their

> living on their feet (head trainer and server/bartender in a restaurant with

> regular 12 hour shifts).

> Last Wednesday during work, my right leg starting hurting from the middle of

> my buttocks straight down the back of the leg.  Within an hour or so, I

> literally couldn't walk without wanting to scream out.  I've never had

discomfort

> like that before.  I've never called in sick to work in over 5 years, not even

> when I went every morning 1 1/2 hours away for orbital radiation. So NOT

> working because of discomfort is not like me at all. In fact, I pride myself

on

> being stronger and more durable than all the young'uns I work with:-)

> I had to leave in the middle of my shift. I saw the doctor and he said my

> muscles had gone into spasm and were squeezing on the sciatic nerve causing

the

> pain.  He told me I needed complete bed rest (NOT LIKELY since I live alone

> and pay my own bills).  He gave me vioxx and flexeril.  He did not think it

was

> Graves related, but my sed rate and antibody rates are still very high.

> I did have yesterday and today off and stayed off my feet for the most part,

> but today I can tell if I walk around much the same thing is going to happen

> again.  My doc is also testing me for RA, but those results aren't back yet. 

> Can the antibodies go after other tissues besides the eye tissues??  He also

> did an ANA test and another sed rate test. He thinks I might have something

> else autoimmune going on beside Graves. Is that

> common? I didn't have any of

> these problems when I was first diagnosed with Graves in 1979. And then none

> of them during these 20-odd years of remission.

> To be perfectly honest, I'm a little sick of being sick:-)

> BTW, Elaine, has your GO book come out yet?

> Terri

> Graves disease 1979; treated with RAI; exothalmia 1982, treated with IV

> steroids; since then on one or another form of

> replacement hormone. New flare up

> of TED with severe double vision, swelling in intraocular muscles and

> inflammation in August of 2002. Currently hypoactive.

> Treated TED with prednisone.

> It worked while on prednisone, but TED came back worse after. Underwent

> Orbital radiation June-July 2003. No change yet.

[Guest guest]

Terri,

Is he, perhaps, considering fibromyalgia? Also a probable autoimmune disease

which can behave very much like you describe.

Laurel

Muscle involvement?? Elaine or anyone?

Hi everyone:

Have had something strange happening the last week or so. I don't know if

it's Graves related or not but it is sure a problem for someone who makes

their

living on their feet (head trainer and server/bartender in a restaurant with

regular 12 hour shifts).

Last Wednesday during work, my right leg starting hurting from the middle of

my buttocks straight down the back of the leg. Within an hour or so, I

literally couldn't walk without wanting to scream out. I've never had

discomfort

like that before. I've never called in sick to work in over 5 years, not even

when I went every morning 1 1/2 hours away for orbital radiation. So NOT

working because of discomfort is not like me at all. In fact, I pride myself

on

being stronger and more durable than all the young'uns I work with:-)

I had to leave in the middle of my shift. I saw the doctor and he said my

muscles had gone into spasm and were squeezing on the sciatic nerve causing

the

pain. He told me I needed complete bed rest (NOT LIKELY since I live alone

and pay my own bills). He gave me vioxx and flexeril. He did not think it was

Graves related, but my sed rate and antibody rates are still very high.

I did have yesterday and today off and stayed off my feet for the most part,

but today I can tell if I walk around much the same thing is going to happen

again. My doc is also testing me for RA, but those results aren't back yet.

Can the antibodies go after other tissues besides the eye tissues?? He also

did an ANA test and another sed rate test. He thinks I might have something

else autoimmune going on beside Graves. Is that common? I didn't have any of

these problems when I was first diagnosed with Graves in 1979. And then none

of them during these 20-odd years of remission.

To be perfectly honest, I'm a little sick of being sick:-)

BTW, Elaine, has your GO book come out yet?

Terri

Graves disease 1979; treated with RAI; exothalmia 1982, treated with IV

steroids; since then on one or another form of replacement hormone. New flare

up

of TED with severe double vision, swelling in intraocular muscles and

inflammation in August of 2002. Currently hypoactive. Treated TED with

prednisone.

It worked while on prednisone, but TED came back worse after. Underwent

Orbital radiation June-July 2003. No change yet.

[Guest guest]

In a message dated 9/23/2003 1:02:45 AM Central Daylight Time,

elainetm@... writes:

> My endocrinologist treats all auto-immune maladies, he regularly sees them

> together in the same patient.

>

> Do I, a fellow sufferer think you are RA, yes, I think there's a good

> possibility. Let's see what Elaine thinks. I suspect she also has seen the

> auto-immune diseases run together>>

>

>

Graves is such a fun disease!!! This never happened 20 years ago when I was

first diagnosed. I had it, they zapped it, and everything has been on an even

keel until last year.

Got my latest labs today.

My CRP is 2.0 (range .50)

My Sed rate has gone up to 63 (range 20 -- last week my rate was 43)

My RF screen was positive

My RF Titer was 320 (range 20)

But my doctor says that with autoimmune diseases, these results don't mean

anything definitive because they mask each other. He did range of motion tests

with my joints and they are fine. But every muscle he pushed hurt, some to

the point where I wanted to hit him back:-)

Fatigue is still a big problem.

He ran one more test, the ANA, which hasn't come back yet.

He is meeting with my endocrinologist tomorrow and sending me to a rheumatoid

specialist for a consult.

Hope this makes some sense to someone!!

So how do they treat your RA, Elaine?

Terri

Graves disease 1979; treated with RAI; exothalmia 1982, treated with IV

steroids; since then on one or another form of replacement hormone. New flare

up

of TED with severe double vision, swelling in intraocular muscles and

inflammation in August of 2002. Currently hypoactive. Treated TED with

prednisone.

It worked while on prednisone, but TED came back worse after. Underwent

Orbital radiation June-July 2003. No change yet.

[Guest guest]

In a message dated 9/23/2003 10:22:50 AM Central Daylight Time,

Geneva248@... writes:

> Is he, perhaps, considering fibromyalgia? Also a probable autoimmune

> disease which can behave very much like you describe.

>

At this point he's just tested for RA, which came up positive. He's sending

me to a rheumatoid specialist for consultation.

Terri

Graves disease 1979; treated with RAI; exothalmia 1982, treated with IV

steroids; since then on one or another form of replacement hormone. New flare

up

of TED with severe double vision, swelling in intraocular muscles and

inflammation in August of 2002. Currently hypoactive. Treated TED with

prednisone.

It worked while on prednisone, but TED came back worse after. Underwent

Orbital radiation June-July 2003. No change yet.

[Guest guest]

Hi Terri,

My eye book should be out in the next few weeks. The publisher didn't like

the cover design so they're re-doing it.

Your high sed rate suggests that an inflammatory process is going on, and I

don't think it's thyroid related. It could just be an isolated muscle spasm.

Usually RA causes joint pain rather than muscle pain. And if you're even

slightly hypothyroid that too can influence muscle activity. Let us know your

results

when they come back. Take care, Elaine

[Guest guest]

Terri,

I was on PTU for the first Graves session, then the second

was more of a problem about seven years later, my TED

appeared before noticeable subjective complaints from

Graves. The eyes sent me to the doctor. By the time tests

were done to confirm, I had severe muscle weakening and had

problems rising from sitting, PTU again came to the rescue

and the body reacted well though the eyes did not. I

started on PTU and switched to tapazole during this bout and

tolerate both medications. Eventually I did require orbital

radiation along with a short dosing period of prednisone to

correct double vision. My lids have remained slightly puffy

(but I also suffer from allergies, have dogs, and probably

should dust more often <smile>) and I do not know where one

thing starts and the other ends, the double vision and

protrusion/stares are a thing of the past (and I pray that

is a permanent past!). My third bout is just recently

(following the quit smoking business, each of the bouts has

followed a period of not smoking). I am not showing

physical symptoms of Graves, no tremors, but I think my RA

has been aggravated, and I no longer can easily separate

where one thing ends and another begins. Legs in pain can

just as easily be Graves as arthritis. It's a real problem

for all of us to pinpoint what is going on. Tests confirm

that I am hyper, but I think many of my complaints (swelling

ankles, a NEW thing, tiredness, a NEW thing) would indicate

I am hypo. I had labs in August, will be having more labs

soon. I have a follow up with endo in October.

Two sisters are naturally hypo, I have always been hyper. I

have refused RAI from the beginning. Now, it is easy for me

to suggest RAI will throw me into hypo and hypo is NOT smart

for someone who has dealt with TED. The doctors are no

longer as pushy about it as the perfect cure to a thyroid

problem when I ask them whether TED would be exacerbated.

I hope your pain is subsiding and that the follow up gives

you the relief that comes with knowing.

Elaine

Excess on occasion is exhilarating. It prevents

moderation from acquiring the deadening effect of a habit.

--W. Somerset Maugham

Hello TrayExo

On Tuesday, September 23, 2003, you wrote

> In a message dated 9/23/2003 1:02:45 AM Central Daylight Time,

> elainetm@... writes:

>> My endocrinologist treats all auto-immune maladies, he regularly sees them

>> together in the same patient.

>>

>> Do I, a fellow sufferer think you are RA, yes, I think there's a good

>> possibility. Let's see what Elaine thinks. I suspect she also has seen the

>> auto-immune diseases run together>>

>>

>>

> Graves is such a fun disease!!! This never happened 20 years ago when I was

> first diagnosed. I had it, they zapped it, and

> everything has been on an even

> keel until last year.

> Got my latest labs today.

> My CRP is 2.0 (range .50)

> My Sed rate has gone up to 63 (range 20 -- last week my rate was 43)

> My RF screen was positive

> My RF Titer was 320 (range 20)

> But my doctor says that with autoimmune diseases, these results don't mean

> anything definitive because they mask each other. He did range of motion

tests

> with my joints and they are fine. But every muscle he pushed hurt, some to

> the point where I wanted to hit him back:-)

> Fatigue is still a big problem.

> He ran one more test, the ANA, which hasn't come back yet.

> He is meeting with my endocrinologist tomorrow and sending me to a rheumatoid

> specialist for a consult.

> Hope this makes some sense to someone!!

> So how do they treat your RA, Elaine?

[Guest guest]

Terri,

That high sed rate indicates the pain and is often

used by rheumatologists for gauging the wellbeing of an RA

patient.

Elaine

A good deed never goes unpunished. --Gore Vidal

Hello TrayExo

On Tuesday, September 23, 2003, you wrote

> In a message dated 9/23/2003 10:22:50 AM Central Daylight Time,

> Geneva248@... writes:

>> Is he, perhaps, considering fibromyalgia? Also a probable autoimmune

>> disease which can behave very much like you describe.

>>

> At this point he's just tested for RA, which came up positive. He's sending

> me to a rheumatoid specialist for consultation.

> Terri

[Guest guest]

In a message dated 9/23/2003 9:31:09 PM Central Daylight Time,

elainetm@... writes:

> I was on PTU for the first Graves session, then the second was more of a

> problem about seven years later, my TED appeared before noticeable subjective

> complaints from Graves. The eyes sent me to the doctor. By the time tests

> were done to confirm, I had severe muscle weakening and had problems rising

> from sitting, PTU again came to the rescue and the body reacted well though

the

> eyes did not.>>

So the PTU helped with the leg and muscle pain? I had RAI 20 some years ago

and don't have much of my thyroid left. Do they still do PTU after that? I

don't think they know what is going on yet. Just high antibody tests (every

kind of antibody test they've done) high sed rate and high CRP and RA. Is there

any way to be sure since these things seem to overlap. And what, if

anything, can be done about it?

> << I am not showing physical symptoms of Graves, no tremors, but I think my

> RA has been aggravated, and I no longer can easily separate where one thing

> ends and another begins. Legs in pain can just as easily be Graves as

> arthritis. It's a real problem for all of us to pinpoint what is going on. >>

I guess that is the crux of the problem. And how to treat it. So legs in

pain can be from Graves then??

> <<I hope your pain is subsiding and that the follow up gives you the relief

> that comes with knowing.>>

As long as I don't get up there isn't any pain. But after being on my feet

for as short a period of time as 1/2 hour, it starts again. And that's a

problem with 12 hour shifts-)

Terri

Graves disease 1979; treated with RAI; exothalmia 1982, treated with IV

steroids; since then on one or another form of replacement hormone. New flare

up

of TED with severe double vision, swelling in intraocular muscles and

inflammation in August of 2002. Currently hypoactive. Treated TED with

prednisone.

It worked while on prednisone, but TED came back worse after. Underwent

Orbital radiation June-July 2003. No change yet.