Anyone else have Myositis? Discouraged

[Tivia]

It just keeps coming dont it. It wouldnt be AI disease if it didnt bring its friends and family along for the ride  They suspected I have one of the myositis when my CK came back really high, with muscle pain and weakness. If they def found the the labs saying a myositis then you should find out what one, the myositis foundation can give you info into all the dif types and treatments. Or if its just myo from your AI inflammation. Keep your chin up, it waxes and wanes for the most part.

http://www.myositis.org/

[eija]

I too was diagnosed with Myositis, simply from presentation.  She never mentioned bloodwork markers for it.  For a long time I've had weakness/fatigue in my arms.  I can barely fold a load of laundry without having to take a break.

I remember complaining about muscle weakness to my rheumy. He asked me to hold my arms horisontally in front of me. When my arms got tired, he said, surprisedly: "oh, that soon?" and that was it. But yes, it ebbs and flows. Some days it's just there, some days it's plain impossible.

Last summer I cut my hair short because it was too much to get it washed. Now it's grown too long again so I guess I should have it cut again. I just hate sitting at the hairdressers    Folding laundry... I can't get a load of laundry folded. I must rest even while folding one single bedsheet! And today at the stable I noticed that trying to lift the saddle to adjust its placement on the horse just didn't happen. And it's a dressage saddle, which is nowhere near as heavy as western saddles!

I don't know about symptoms in my legs, but there's something. Getting up from a normal chair is no problem, but from the sofa I need to help myself with my hands. Once, trying to step up into a trailer (it was a really high step, like way over my knee) my muscles gave in and I fell on the step. Had to do it again, but by pulling myself up with my hands.

Also, I'd be interested to know if anyone else has had this: When running, my legs can quite suddenly just stop. It goes like in a slow-motion movie: I realise my legs aren't doing what they should and I try to tell them to run but they just don't. So because I'm in full speed and my legs stop, of course I fall flat on the ground. Two-three years ago I fell so bad I got a bruise in my lung and hurt my leg real bad. Haven't really run since, not even short distances, until today and maybe a week ago - carefully and not so fast, a short way to take the horsie to the enclosure. Even that short, cautious run has felt horrible and shaky and I've been afraid and felt that I'll fall again.

In any case, it seems that muscle weakness in various forms is very common with Sjs

[susie]

Hi Littleone,
I just saw this sorry. I am on Imuran for the multi autoimmune diseases I have, I take carbamazepine for the sfn/PN. They are discussing putting me on IVig because of all of the autoimmune diseases the Rheumy believes it would help my sfn/pn getting the autoimmune diseases better controlled. I am a lot of other drugs too, but these are the ones for the diseases, I have to take pain meds daily, does nothing for the weakness, and the sfn can cause pain and weakness too. So it is like which disease is causing which symptoms. It drives me nuts. I just had a friend say to me, well Sjrogens is not that bad, it only causes dry eyes and mouth, and I have that. lol Oh well what do they know right?

[littleone]

Thanks so much everyone.

Susie, Im just started IVIG so ill let u know if it helps. I feel ur pain. I never know what's what as I have multiple AI issues. At the moment it's my PN 

I hear ppl say it gives them their life back. I want nothing more!

Littleone

[irish]

Anyone with muscle weakness needs to have some testing done. The one test CPK will show up if muscle involvement or heart issues are involved. My son with the horrible Hashimotos also has elevated CPK and doc said it should go down with the med he is on. He was on Imuran and got terribly sick after several months of it. He is to now go on Methotrexate. This is being given for his Hashimotos which has caused Hashimotos encephalopathy. Thankfully we caught it before it got really dangerous. No thanks to his old GP or internist who didn't pay much attention to his thyroid issues and didn't treat his depression correctly. Enough said.!

Also, anyone with muscle weakness should do a search on Myasthenia gravis as this AID is common ini people with thyroid and sjogrens. I would advise you to talk to your doc about this and see a neuro. It is better to see a neuro and have the blood work because if it comes back negative the neuro will not automatically say. "Well, that proves you don't have Myasthenia". As we should all know by now lab work is fickle and much of the time we have an AID without any positive blood work. Good luck to all. Irish

[Madison Granny]

I have all the symptoms but the test come back negative.  I think you can test negative and still have it like you can Sjogren's.  I think it could be caused by Sjogren's.

[irish]

Myasthenia gravis is a totally different autoimmune disease and it runs in the pack of autoimmune diseases as all the diseases do. It just seems that people with myasthenia gravis have thyroid issues and/or sjogrens. Myasthenia is not caused by sjogrens. All autoimmune diseases are very much similar as they are all making antibodies to try and kiill us off in some way, shape or form.

Hashimotos, which is autoimmune thyroid disease makes antibodies that kill off the thyroid. These antibodies can get so high that they can affect the brain and cause stsrokes, etc--sort of a vasculitis like issue from what I have read. The myasthenia has antibodies that destroy the enzyme that allows the nerve signal to the muscle to go through. Destroy the enzyme and the muscle is not working like it should and becomes weak. This can even affect the throat and swallowing.

The main theme of many researchers is that all autoimmune diseases (and there are many) are triggered or caused by pretty much the same process. They haven't figured the process out yet but when they do there should be a ton of research to find drugs to help us all. One can only hope to be that lucky. If not us, maybe it will help our children. Also, if you are having myasthenia like symptoms and your doc is not being proactive enough you probably would do well to get a second opinion. I have had a strange voice for years as it is very low and nasally and sounds like I am talking in a barrel. My immunologist met me and told his NP that I probably had myasthenia based on my voice. The muscles in the soft palate have relaxed a lot and it allows air to get in where it shouldn't.

He also asked me if I could blow up balloons and "no" I haven't been able to blow up balloons for years. This caused me to think and I then remembered that I always had a heck of a time passing my CPR classes at work as I would lose air and couldn't blow up Annie. I also would swallow and have peas and other food go up into my nose and this is a cardinal sign of myasthenia. Not the once in a while when laughing thingy, but just too often during normal eating. TAke care and good luck. irish

P.S. I had negative Acetylcholine blood work and also negative EMG's. My antistriated muscle antibodies were through the roof and this test, thought not always done, is an indicator of myasthenia gravis.