Re: I have a question

September 27, 1999

I am new to the group. I don't have an official diagnosis of an

inflammatory disorder, but am being tested. I have fibromyalgia, but have

developed new symptoms over the last 6 to 8 months that are very disturbing

and don't seem to be part of the fibro. I have been stumbling when I try to

walk like the muscles in my legs are weak. My voice is weak and cracks. I

am also having difficulty swallowing pills and this has never been a problem

before. I also have swelling around my hips and spine. Swelling is not a

normal symptoms of fibro.

Could any of you tell me if these are symptoms of polymyositis and if any of

you have experienced what I am talking about. I need help to try and get

the doctors to believe me when I say I know this is not fibro. They want to

lump everything into the fibro category.

Thanks for your help,

Fern

September 27, 1999

Hi Fern

I have dermatomyositis and experienced

weakness, trouble swallowing, extreme

itching particularly on the stomach. I didn't

have swelling on the hips but had really bad

swelling in the legs long before the weakness

started......if you can't get your doctor to take

you seriously LOOK FOR ANOTHER DOCTOR

Don't let them jerk you around.....there are

various tests they can for for both DM & PM

which are quite similar........In both of these

diseases......each case is different....some

have some of the symtoms and some have

others....and some have all of them. Good

luck to you.....and remember we are here

for you.

Teddi

September 27, 1999

Teddi,

Thank you so much for answering my post so quickly. You don't know me too

well, but I don't give up easily. I got my fms diagnosis because I figured

it out and made them look at the documentation. I will do what I need to do

to get proper treatment. I too have had the red rash that itches. I get

it on my face, my chest, and above my knees. I hope I am wrong, but if I am

write I want proper treatment, but most of all I want to be validated as

someone who knows her body and knows how to get the medical community to

listen.

Thanks,

Fern

September 27, 1999

Fern

The problem with the myositis diseases...DM

& PM is that they are rare diseases and the

majority of doctors don't know anything about

them.....After my legs begin swelling I was

misdiagnosed with congestive heart failure......

......going to dr every 2 weeks.....saying every

time I am getting weaker & I itch....and he

would just blow me off and do another EKG.

.....I finally collapes and was taken to the ER.

I'm enclosing a URL for the Myositis Assoc.

Find yourself a good rheumatologist and

get diagnosed.....the sooner the better.

http://www.myositis.org/

Teddi

September 27, 1999

Fern

This is a PS (my mind...it's a strange and

wonderful place any more but I wouldn't

want to live there. LOL)

Where do you live.....you probably said and

I've forgotten

Teddi

Teddi,

Thank you so much for answering my post so quickly. You don't know me too

well, but I don't give up easily. I got my fms diagnosis because I figured

it out and made them look at the documentation. I will do what I need to do

to get proper treatment. I too have had the red rash that itches. I get

it on my face, my chest, and above my knees. I hope I am wrong, but if I am

write I want proper treatment, but most of all I want to be validated as

someone who knows her body and knows how to get the medical community to

listen.

Thanks,

Fern

September 28, 1999

Teddi,

I live near Richmond, Virginia

Fern

September 28, 1999

Hi Fern

Welcome to the group. If your going to a Rheumatologist who has never

dealt with a Myositis patient then he's going to try to lump you in any

other category. Ask him if he's ever had a Myositis patient. If not

then you must find one to get the proper diagnoses. Stumbling and

weakness in the legs was my first indication. I also experienced the

swallowing difficulties and my voice did change. Has he taken blood

work up to check your CK level? This test will show if there is

inflammation in your muscles. If this test is elevated then they will

move on to the next step and do a muscle biopsy. This will tell them

what form of Myositis you might have. Since you didn't say anything

about a rash you might not have DM. But PM is a possibility. You can

contact the MDA or the Myositis foundation for a list of doctors in your

area that treat Myositis patients. Unfortunately, most Rheumatologists

have never seen a myositis patient so they don't know what to look for.

Also, if there is a research/training hospital in your area, call them

and ask if they have a dept that specializes in rare diseases. I'll see

if I can get the email address for the two site's I suggested.

Vicki

September 28, 1999

Vicki,

Thanks for the welcome. I am not currently going to a rheumatologist. I am

seeing a physiatrist for pain management because I have been diagnosed with fms.

I went to my family doctor last week because the fms doctor is lumping

everything into the fms category. These symptoms are new and I don't feel they

are related to fms. I have done extensive research about fms and I am a nurse.

I feel with my knowledge, my experience, and knowing my body that things should

be checked into further. We should never just assume that a symptom is part of

one condition until we have tests to back that up.

My family doctor ran some blood work and I will get the results on Thursday.

Once they come back, I will request further tests such as the CK level. He did

a sed rate, RF, lupus, and ANA. He also did a CBC, magnesium, sodium, and

potassium. If the sed rate is up, I am sure he will be willing to do more

tests.

I may be jumping the gun, but my symptoms seems to fit the profile of PM to a

tee.

As far as a rash, I have been having this blotchy red rash on my face for a

while now. It seems to appear when I get out of the shower, get overheated, or

am out in the sun. It is not there all the time. I have also had some red

bumps that itch on my knees, ankles, and chest in the past month.

Thanks for your help!

Fern

September 28, 1999

Fern

The itch and blotch go with DM I don't know

about PM....RUN don't walk to a rheumetoligist

I don't know whether I told you this (predisone

fog of the mind) I was misdiagnosed with

congentical heart failure for several months

before another doctor dx DM. And the dr

that mis dx was an internist. Even if the

blood tests are inconclusive....follow your

gut feeling and get a second opinion from

a rheumy.

Both Vicki and I have known the frustration

of unfeeling doctors and doctors that would

rather let you die than admit that they don't

know everything.

Teddi

September 28, 1999

Fern

I remember when I was in the hospital and my doctor came into my room.

I had just gotten out of the shower and he wanted to examine me to see

if I had a rash. He asked if a rash appeared when I was in the sun, or

got over heated. Of course I don't have the rash because I have PM.

But, it sure sounds like you have DM. Your doctor should have run the

CPK test along with the rest of the tests. When I was really sick and

swollen my CPK level was only 289. But, it was above the normal range.

This doctor ignored this and I continued to go on getting sicker and

sicker. By the time I was put in to the hospital just 5 months after

that blood test, I was at 12,000. The longer it goes the more damage is

done to the muscles. I would really suggest contacting a Rheumatologist

in your area and make sure they know about Myositis. If my first GP

would have listened to me and my symptoms then my lungs wouldn't have

become so damaged as they are today. Time is very important. I had to

change health care providers to get any help. Be strong and make sure

they know you are in power not them. It's your body and your health.

Ask as many questions as you like.

ANA testing:

http://www.lupusnet.ucalgary.ca/lhnet/module1.htm

http://www.labmed.washington.edu/Division/Immunology/ANA_grp.html

Vicki

September 28, 1999

Teddi,

Thanks so much for all your help. It is nice to know I am not loosing it

completely by thinking this is PM or DM. There is no other condition that I

know of that would produce these particular symptoms. I plan to print out

the information and take it to the doctor. The voice problem is getting

worse and that is not good since I have three children at home.

Gentle hugs,

Fern

September 28, 1999

Fern

I also suggest that when your voice is in that condition to please watch

what you eat. Cut your meat in small pieces and eat slowly. I went to

a restaurant and sat down for a nice lunch. I was loosing my voice and

the Waitress could hardly hear me. Didn't bother me since this had been

going on for a couple of months. I took a bite and it got down to my

neck level and wouldn't go down any further. I kept my head and started

sipping water to make it float down. I explained this to my doctor and

he said that the muscles actually don't work correctly to push the food

down. Once the throat is involved it can be serious.

September 28, 1999

Fern

Anytime I can help....or just listen.....I am here

Hugs

Teddi

September 28, 1999

Fern

I second what Vicki says about the voice. I

found that I needed to take a sip of water

after every bite if it was dry......also small

bites.

Teddi

September 28, 1999

After reading your website and the links, I am convinced that I have to

pursue this. The symptoms I am having fit the description of myositis. It

is amazing to find others who are experiencing the same things. The fms

support group has been great, but some of my problems have not been the same

as theirs and it has been confusing trying to figure out what is going on

with me.

I pulled out my labs tonight and my ANA is indicative of myositis, I just

need to have a CPK level done to see if that is also elevated. I just knew

the raspy voice and the difficulty swallowing was not fms.

Thanks guys, I feel better knowing I have a place to come to talk about

this.

Fern

September 29, 1999

Hi Fran

Glad to hear that you will be persuing a dx.

Yes, it is nice to talk to others who havw the

same thing. When I came down with this the

doctors told me almost nothing about the disease and nobody had ever

heard of it....I didn't talk to anyone who had it until I got on

the internet a jew months ago.....and ths after

3 yrs.

Teddi

October 2, 1999

Hi guys,

I wanted to let you know that I went back to my family doctor on Friday and he

agrees there is definitely something wrong. He is sending me to an ENT on

Thursday to have my throat checked out. He says regardles of the diagnosis I

need to have that checked out before it causes a major choking problem or

aspiration.

He also drew blood for a CPK, LDH, and SGOT. My tests from last week were all

normal except my ANA was still elevated. My sed rate was only 3, but I just

stopped taking Viox 4 days before the test and I am afraid it may have altered

the results.

Have any of you ever used the services of MDA? I requested some information

from them and they told me they will provide an examination by a doctor

experienced with PM/DM.

Could someone describe the rash that they have with DM. I get a flushed look

on my face, but no bumps. My scalp itches terribly and I am getting red bumps

that itch on my feet and ankles. I have scratched some of the bumps raw. The

rash seems to come and go. Is this normal?