Re: Re; In the muscles - from Ky

[Guest guest]

In a message dated 09/04/2004 09:27:30 Central Standard Time,

rbbrand2@... writes:

> My medical history proves that this has been going on for some time. First

> indication was the thyroid disease at 13. Been battling obesity since then

> and chronic fatigue, along with a few other health issues. Was incorrectly

> diagnosed with fibromylaigia some time back. Have applied for social

security.

> Been a real mess for the last year....

>

>

>

No disrespect to your doctor, but RA is a joint disease first and foremost,

so this is confusing to me. Did he/she explain it to you? There are many

muscle diseases out there, like Dermatomyositis, that cause terrible muscle pain

and extreme weakness and fatigue. Can you tell us how the Dr. explained RA in

the muscles to you? Cary

[Guest guest]

Hello Sierra,

Just returned from a few days away to Gatlinburg with a friend down the street.

Weather was beautiful. The change of scenery did me good.

My RA is not starting in the joints. That is why it has taken over a year to

properly diagnose. My tendons and muscles are the focus of the inflammation. I

have no joint damage, swelling of the joints nor disfigurement. But the muscles

are in a lot of pain. We did over 15 tests to point what it happening to me. My

RA doctor gave me a RA brochure and also talked to me about the progression of

my disease. The end result was organ failure as the disease enters the worse

stage. Not everyone progresses like this. I have beginning scleroderma and the

RA doctor said that I have overlapping symptoms of several things going on.

Blood tests confirmed RA and scleroderma, but he wants to make sure nothing else

develops and to check levels, so blood test every 3 to 4 weeks is in the future

now. Chemo (methotrexate) has been going on two weeks now.

My medical history proves that this has been going on for some time. First

indication was the thyroid disease at 13. Been battling obesity since then and

chronic fatigue, along with a few other health issues. Was incorrectly diagnosed

with fibromylaigia some time back. Have applied for social security. Been a

real mess for the last year....

[ ] Re; " In the muscles " - from Ky

I am also on steriods twice a day. My muscles

> paralyze off the steriods. Mine is in the muscles...bypassed the

joints

> already....intermediate stage....

I'm not sure what you mean, here. Could you say more?

Sierra

[Guest guest]

: I found your post quite interesting. And if you don't mind

me asking...do you know what tests were done? In these diseases it

is not uncommon for many blood test to be done, but alot of them can

be misleading. You can have a positive RF and have scleroderma and

not RA at all. Scleroderma starts out resembling both lupus and RA

and is quite difficult to diagnose. You said you had no joint

involvement and that would be quite unusual in both RA and

scleroderma, but especially in RA, and one of the criteria for

diagnosing RA is swollen joints, usually several. Scleroderma does

not always start with joint inflammation but most of the time it

will show up, and even at times cause joint erosion. All these

diseases can eventually cause organ damage, but not always and it

was good for your doctor to give you the brochure, but please

realize that internal involvement is not a given. Usually with

scleroderma there is always gastro problems, mine started with a

feeling of not being able to swallow....it use to be that a

scleroderma diagnosis was gloom and doom, because they did'nt know

alot about it, but only in the WORST cases is that true, and with

todays medical science they can treat the symptoms better than they

used to. If you don't mind me asking do you have skin thickening?

Because that is the number 1 criteria for scleroderma...I am sorry

all that you have been through, as I know what you have been through

it took me many years for a firm diagnosis, and I also started with

a mixed diagnosis....lupus and scleroderma, I still to this day have

lupus like symptoms to include the butterfly rash, but as it has

gone along the scleroderma has singled itself out. I was glad to

see your doc is doing regular blood testing with you taking

methotrexate as they have to watch your liver function, also the

amount that are given for rheumatic disease is usually not at chemo

level....how much metho are you taking? I would also suggest that

you get some SD info...I have alot I could send you if you would

like....also muscle problems would be alot more common with SD than

RA...I wish you days of feeling better and commiserate knowing what

you are going through.....Kathi in OK

Muscle Involvement

Muscle involvement is common in scleroderma.

The weakness and wasting of muscle commonly found in scleroderma is

a result of disuse owing to joint contractures as a result of the

skin involvement.

About 20% of patients with scleroderma develop a bland non-

progressive muscle disorder (myopathy). Weakness is not usually

noticed by the patient, but it can be detected on physical

examination by the physician and the tests of muscle inflammation

are either normal or only minimally elevated. The muscle biopsy

shows areas of replacement of muscle fibres with collagen tissue

without evidence of inflammation. This muscle involvement does not

usually require treatment.

A very small minority of patients develop acute inflammation of

their muscles with severe muscle pain and weakness especially around

the shoulders and hips causing problems in arising from chairs and

elevating the arms. This may occur in patients who have an overlap

syndrome with features of scleroderma, polymyositis and S.L.E.

(Mixed connective tissue disease). This form of muscle inflammation

requires high dose Prednisone (Cortisone) for control.

Tendon Involvement

http://www.haps.nsw.gov.au/patrsrcs/patsclero/msclsclero.htm

> I am also on steriods twice a day. My muscles

> > paralyze off the steriods. Mine is in the muscles...bypassed

the

> joints

> > already....intermediate stage....

>

> I'm not sure what you mean, here. Could you say more?

>

> Sierra

>

>

>

>

[Guest guest]

, this is very odd. I'm jumping on the " it doesn't sound like RA "

bandwagon with the others who have commented. I would seek a second

opinion about your diagnoses.

RF can be positive in scleroderma and muscle and tendon involvement are

also very common. A positive RF does not prove an RA diagnosis - the

clinical presentation is much more important.

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

Re: [ ] Re; " In the muscles " - from Ky

> Hello Sierra,

>

> Just returned from a few days away to Gatlinburg with a friend down

the street. Weather was beautiful. The change of scenery did me good.

>

> My RA is not starting in the joints. That is why it has taken over a

year to properly diagnose. My tendons and muscles are the focus of the

inflammation. I have no joint damage, swelling of the joints nor

disfigurement. But the muscles are in a lot of pain. We did over 15

tests to point what it happening to me. My RA doctor gave me a RA

brochure and also talked to me about the progression of my disease. The

end result was organ failure as the disease enters the worse stage. Not

everyone progresses like this. I have beginning scleroderma and the RA

doctor said that I have overlapping symptoms of several things going on.

Blood tests confirmed RA and scleroderma, but he wants to make sure

nothing else develops and to check levels, so blood test every 3 to 4

weeks is in the future now. Chemo (methotrexate) has been going on two

weeks now.

>

> My medical history proves that this has been going on for some time.

First indication was the thyroid disease at 13. Been battling obesity

since then and chronic fatigue, along with a few other health issues.

Was incorrectly diagnosed with fibromylaigia some time back. Have

applied for social security. Been a real mess for the last year....

>

>

[Guest guest]

: Has your doc suggested a barium swallow, or dysphgiagram? I

also find that when on steroids I have a much better time

swallowing, and hate to eat in public because it is very embarrising

to me....I fought steroid use for quite awhile and we my docs and

myself decided to compromise, I take a low dose 7mg daily....and can

do a pulse dose when I am having a really hard time. I have never

had the pain you describe with your muscles, but much joint

involvement, also bilateral carpal tunnel surgery that was worse

after the surgery, because or so they tell me it was never CTS to

begin with ,it was caused by the SD. I also have lung fibrosis that

they watch pretty close, also have the malapsobtion that goes with

SD, and various times have had different things they treated as they

came up...I had extreme thickening of skin from hands to elbows, and

toes to knees, but the enbrel has seemed to slow it down. Has your

doc said anything about the biologics to you? I hope you keep us

posted on how it goes for you...and I look forward to hearing more

from you.....kathi in ok

-- In , " rachel brandenburg "

<rbbrand2@m...> wrote:

> Hi Kathi,

>

> This is very interesting....I have thyroid disease also. The

swelling I have is not the joint, but the tissue to the top and

bottom of the joint. The joint is rarely sore, but it did turn red

twice. RA doc discovered the sore places were where the tendons

hooked on the joint. X-rays showed no deterioration or loss of mass.

The muscles are excruciating painful. Steroids as high as 40 mg per

day x2 have been prescribed. Am on 20 per day unless muscle

paralysis starts, then goes up to 30 until the flare up ceases. I

have extreme difficulty swallowing at lower doses of prednisone and

choke frequently. The muscle will not take the food down and I have

to struggle to try to swallow and not die. To be honest with you, I

lean more to scleroderma because of the symptoms but the tests

results are a bit confusing to me. All I know is that right now,

steroids are helping me to be able to move around, but the RA doc

says that I cannot stay on them. Off them and I want to find a way

to end the pain. Can't stand it, especially when I lose bodily

function control and have the paralysis. I want to do more in life

and the thought of being limited is extremely frustrating. I am

walking more, exercising more and keeping my mind active....but

difficult to do with being morbidly obese.

>

> Still is depressing tho...

>

> [ ] Re: Re; " In the muscles " - from Ky

>

>

> : I found your post quite interesting. And if you don't

mind

> me asking...do you know what tests were done? In these diseases

it

> is not uncommon for many blood test to be done, but alot of them

can

> be misleading. You can have a positive RF and have scleroderma

and

> not RA at all. Scleroderma starts out resembling both lupus and

RA

> and is quite difficult to diagnose. You said you had no joint

> involvement and that would be quite unusual in both RA and

> scleroderma, but especially in RA, and one of the criteria for

> diagnosing RA is swollen joints, usually several. Scleroderma

does

> not always start with joint inflammation but most of the time it

> will show up, and even at times cause joint erosion. All these

> diseases can eventually cause organ damage, but not always and

it

> was good for your doctor to give you the brochure, but please

> realize that internal involvement is not a given. Usually with

> scleroderma there is always gastro problems, mine started with a

> feeling of not being able to swallow....it use to be that a

> scleroderma diagnosis was gloom and doom, because they did'nt

know

> alot about it, but only in the WORST cases is that true, and

with

> todays medical science they can treat the symptoms better than

they

> used to. If you don't mind me asking do you have skin

thickening?

> Because that is the number 1 criteria for scleroderma...I am

sorry

> all that you have been through, as I know what you have been

through

> it took me many years for a firm diagnosis, and I also started

with

> a mixed diagnosis....lupus and scleroderma, I still to this day

have

> lupus like symptoms to include the butterfly rash, but as it has

> gone along the scleroderma has singled itself out. I was glad

to

> see your doc is doing regular blood testing with you taking

> methotrexate as they have to watch your liver function, also the

> amount that are given for rheumatic disease is usually not at

chemo

> level....how much metho are you taking? I would also suggest

that

> you get some SD info...I have alot I could send you if you would

> like....also muscle problems would be alot more common with SD

than

> RA...I wish you days of feeling better and commiserate knowing

what

> you are going through.....Kathi in OK

>

> Muscle Involvement

> Muscle involvement is common in scleroderma.

>

> The weakness and wasting of muscle commonly found in scleroderma

is

> a result of disuse owing to joint contractures as a result of

the

> skin involvement.

> About 20% of patients with scleroderma develop a bland non-

> progressive muscle disorder (myopathy). Weakness is not usually

> noticed by the patient, but it can be detected on physical

> examination by the physician and the tests of muscle

inflammation

> are either normal or only minimally elevated. The muscle biopsy

> shows areas of replacement of muscle fibres with collagen tissue

> without evidence of inflammation. This muscle involvement does

not

> usually require treatment.

> A very small minority of patients develop acute inflammation of

> their muscles with severe muscle pain and weakness especially

around

> the shoulders and hips causing problems in arising from chairs

and

> elevating the arms. This may occur in patients who have an

overlap

> syndrome with features of scleroderma, polymyositis and S.L.E.

> (Mixed connective tissue disease). This form of muscle

inflammation

> requires high dose Prednisone (Cortisone) for control.

> Tendon Involvement

>

>

http://www.haps.nsw.gov.au/patrsrcs/patsclero/msclsclero.htm<http://w

ww.haps.nsw.gov.au/patrsrcs/patsclero/msclsclero.htm>

>

>

>

>

>

>

>

>

>

> > I am also on steriods twice a day. My muscles

> > > paralyze off the steriods. Mine is in the

muscles...bypassed

> the

> > joints

> > > already....intermediate stage....

> >

> > I'm not sure what you mean, here. Could you say more?

> >

> > Sierra

> >

> >

> >

> >

[Guest guest]

i too have alot of muscle, soft tissue, ligament issues. my new foot dr again

tells me he doesn't believe dr tisa went far enough down to release the

ligament and told me to weigh my options and let him know when i was ready to

" fix

it " . now my hip keeps coming out of place. the chiro thinks it's because i am

not putting alot of pressure on that foot. all i know is i am tired of it all

again!!!! have a happy easter everyone. kathy in il