Does anyone know the name of...

[Amphitrite]

The autoimmune condition that effects the muscles.
From doing a little research I've found that they all seem to effect muscle to some extent, but today my rhumatologist said that she is looking at the one that especially effects the muscles, I just can't remember the name and was hoping someone knows what I am talking about.

She said that in some people the need for medication is small and they can function pretty well for a long time and in others it hits hard and someone would need to be on alot of medications and have a hard time functioning and doing many daily activities. But I'm sure that can be said for most autoimmune diseases so that probably doesn't help either.

Anyway, I'm hoping someone has an idea so I can research it a little while I'm waiting for my muscle biopsy. Oh yes and a muscle biopsy needs to be done to diagnose it.

Thanks for any ideas

Amph

[morro]

i am diagnosed . My doctor has recommended therapy. I will like to know more about your mother how she is coping I am 52 years old ,perhaps i was suffering for a while and didnot know , as the disease progress then i decided to go to a doctor i believe my stage is advance , so please let me know what to exoect


Amryl

[Pontiac13]

mY MOM HAS POLYMITOSIS FOR 16 YEARS NOW, IM LOOKING TO TALK TO OTHER PEOPLE ABOUT IT AS SHE HAS ONLY A 35% LUNG CAPACITY, SHE NOW HAS CHOSEN TO TRY THE RITUXIN THEROPY, THEY WANTED HER TO AT 50% BUT BECAUSE OF INSTANT DEATH AND OTHER SIDE EFFECTS SHE CHOSE NOT TO BUT BECAUSE THEY ARE NOW TALKING VENTILATOR OR TRACHE SHE IS MORE WILLING AS OXYGEN WONT HELP HER.DOCTORS DONT KNOW MUCH ABOUT THIS DISEASE AND HOW TO TREAT IT THE THEROPY MAY BRING BACK 10% OF LUNG AND MUSCLE IF IT WORKS PLEASE EMAIL ME ***@****

[Hopelessly_frustrated]

Hello Amph,

I believe the name you might be looking for is called Dermamyositis.  Dermamyositis effect the skin (derma) and the muscles (myo) causing inflammation and stiffness in the joints (itis)  I don’t know for sure if this is what you might be referring to but I hope it helps. Take care and good luck to you.

[Amphitrite]

It could very well be Polymitosis. I fit the symotoms but also for the above ones too.

I called my rhumatologists office but they said she won't be back in the office until next week. I would say that the muscles that seem the most affected are those closer to my torso like my upper thighs and upper arms.
But as you said many areas of my system seem to be effected by whatever is going on.

I have never had any fillings or cavities(don't know how I've gotten away with that thus far!) and the symptoms did begin in my 20's, but late 20's as I turn thirty in Nov.
But I'm sure that's just the most common marker and really as it effects any age that symptoms can start any time.

The one thing I have never noticed is actual swelling like adema or even just inflamation that causes my outer apperance to look inflamed. But I may have swelling and just never notoced it. Defenitly never in my feet or ankles.

I wish this was just Lymes again, well I guess lymes can be just as hard to treat. But as least it is treatable to the point that it can go away!

Thanks for your thoughts!!

[floridagirl11]

Is it Polymitosis? Polymyositis is a disease of muscle featuring inflammation of the muscle fibers. The cause of the disease is not known. It begins when white blood cells, the immune cells of inflammation, spontaneously invade muscles. The muscles affected are typically those closest to the trunk or torso. This results in weakness that can be severe. Polymyositis is a chronic illness with periods of increased symptoms, called flares or relapses, and minimal or no symptoms, known as remissions.

Polymyositis is slightly more common in females. It affects all age groups, although its onset is most common in middle childhood and in the twenties. Polymyositis occurs throughout the world. Polymyositis can be associated with skin rash and is then referred to as "dermatomyositis." It also can affect other areas of the body and is, therefore, referred to as a systemic illness. Occasionally, it is associated with cancer, or with other diseases of connective tissue (see systemic lupus erythematosus, scleroderma and rheumatoid arthritis).

Out of curiosity, do you have any silver fillings in your mouth?

[Amphitrite]

I just looked up Rhabdo and boy does it sound scary and to say the least very unplesant. I can't believe I can't remember the name of this disease my rhumatologist mentioned, I thought maybe if someone mentioned it it would click in my mind.

I guess I will have to call and ask and then come back and tell you. I may just need the extra information you know!! But to be honest I'm petrified to think that that's what she may be talking about and want to run and hide and just ignore it all together!

Kimba, it could be what your mentioning also so my idea of recognizing it has failed! But I will defenitly come back and let you guys know. Basically I'm guessing it has to be one of them or something similiar.

Thank you for your ideas! Very helpful regardless and appriciated, at least I can look them up and research all of them!

Amph

[Bella_Keiko]

oh... liver enzyme tests can be elevated as well with rhabdo.  and from what I hear, these patients hurt so much and their muscles are so weak that it interferes with their activities of daily living.

[Bella_Keiko]

could you be thinking of rhabdomyolysis?

among other things, you mentioned in an earlier post that you have muscle pain, elevated CPK, protienuria and the need for a muscle biopsy (ouch) to make a firm diagnosis.  Rhabdo is the only thing that pops into my mind.

If rhabdo is what you were thinking, i can tell you more about it if you would like.

Bella

[Kimba783]

Could it be one of the inflammatory myopathys? The three main types of chronic, or persistent, inflammatory myopathys are polymyositis, dermatomyositis, and inclusion body myositis (IBM). A muscle bx needs to be done to confirm dx.

Kimba783