hi and welcome have same condition hugs minnie

Hi Minnie,

So far this whole thing has been very confusing.... I had a gp tell me my bloodwork came back positive for myosotis. Now my speacialist tells me it might not be myositis. All i know is im in a lotta pain in my legs so i am having to rely on what there telling me .... right now im waiting for results from an extensive blood panel.... I'm hoping for the best

Greg

welcome to the group, Greg...I don't know anything about Myositis...just sayin hi *S*

Hi there Serenepece,

I am at a bit of a disadvange too as i know very little about it. I'm trying to learn more about it but i find it kind of pointless untill i find out what the official DX is.

Greg

they have to take muscle biopsy to prove if you have it and to tell what type, Im not sure but I do not think blood test can tell.there real good info on it at webmd ,there poly ,derma do you have rash problems,inclusion . This is a rare thing to have ,your amune system attacks healthy muscles.
sorry spelling is bad ,you should read up on it.im in a lot of pain ,hugs minnnie

Minnie,

I went for my initial visit to my specialist last week. He told me a biopsy is not needed to determine all of that. He told me a specific kind of MRI will do the trick. As far as the symptoms no i have no rash just a lot of thigh pain. It seems like the pain is greatly lessened with the norco. I'm still in pain but no where near as bad without it.

Greg

I went and read up on this .I need to thank you ,because the same enzymes that are there for , are the same as heart enzymes some of them . I have very high enzymes for heart trouble but maby part is myosoties.I have fibro on top of this ,do they give you anything for pain,Im not being treated for this so far ,I find muscle relaxers help most of alll for this disorder,hugs minnnie ps do your muscles burn
. do you get weak somdays like its hard tp stand up.

They give me Norco for the pain. It seems to help a lot. I get sharp pain in my thighs thats pretty much non stop. Some days are worse than others but the norco helps quite a bit.

Myotosis and myofacial along wiht Fibro are a lot intertwined. blood tests arent always the way to go. Have you had the electo therapy tests yet and is your Doc putting you in any kind of physical therapy? i have the same plus a bunch more and norco doesnt do much, esp. if the diagnosis is off. if you want to talk privately, send me a PM and i'll send you my email since i'm not on here often anymore.

I'm in the early stages of treatment. I just saw the specialist for the first time about 3 weeks ago. I'm due for a follow up visit in about a week. There talking about doing an MRI later but thats still up in the air at the moment.

Greg, my daughter has myositis and muscle biopsoes are definitely called for in many cases. She showed highly elevated muscle acids. The standard treatment is low dose prednisone. I strongly suggest that you go to the Myositis Assoication website at www.myositis.org and check their inforamtion. There are special centers to treat myositis; fortunately, we live near Baltimore and Johns Hopkins has one of the best. Check the site and find a myositis clinic nearest to you.

Barbara

hello welcome to the group. I have never heard of the condition before so I can't offer advice I was just saying hi