Myositis and MG?

[Goldyukr]

I have Myositis and my neurologist feels I probably also have MG. I’m curious if anyone else has both of those? If so, any tips on helping with management? Thank you

[blondie120]

Hi i was just looking back through some older posts and came across yours, i have MG but know more is going on, im in pain most of the time, feels like my shins have been beaten with a baseball bat just because i changed my heel height, i get ham string pain up into my pelvic bone and down the back of thigh and to my heel and ankle to the point i can barely shuffle let alone walk and constant pain in my upper arm muscles like a vice is gripping them an my lower back cripples me i lose feeling in my backside ... it goes on , does any of this sound familiar to you ? All this is in addition to MG symptoms ive researched alot myositis and connective tissue disease is what ive come up , if you can shed any light id be grateful thanks .

[Goldyukr in reply to blondie120]

Hi. I’m sorry it took me a while to reply. Yes, I get a lot of pain but I honestly don’t know which of my conditions is causing which pain. However, I have read that MG can be painful as well though many doctors don’t recognize it. I remember reading about a study that was done and how surprised they were that over 50% (or something like that) deal with pain as well. My legs are in pain all the time. However, I also have autonomic problems which cause blood pooling in my legs so I’m not sure sometimes what is causing it. My myositis and possible MG are mostly under control right now with Imuran (azathioprine) and yet I’m in terrible pain so I don’t know why. I do get terrible pelvic pain, joint pain and muscle pain. Also, feels often like my muscles are tightening up on their own from hips down. Sorry I can’t be much help on this.

[Goldyukr in reply to Goldyukr]

When my possible MG was bad, I did get pain when trying to blow dry my hair or wash it.

[blondie120 in reply to Goldyukr]

Hi thanks for replying , it really is baffling , the way i am right now i often think i will need a wheelchair in future , but my neuro is trying to help and listens to me which is a first, its prob gona be trial an error finding what else is running along side my MG, im sorry your in such pain , it really takes it out of you and makes everyday tasks so much harder doesnt it , i try not to look glum but honestly its hard sometimes as im sure you know, what do you take for the pain ? Im on codeine an ora morph , works for me but some days nothing touches it you know , i hope you find some answers soon if you do let me know . Just an odd one my hearing is decreased think i may need a test but im wondering if its related to MG anyway take care and thanks.

[Goldyukr in reply to blondie120]

It definitely is hard to function at times and adjust to the new norm. It takes time. Someone told me that losing your health is like losing a close friend in death. It’s a bit of a mourning process leaving your former life behind. But then you’ll find there’s still so much good and positive things.

I’m curious-do you also feel like you get muscle tightening in your legs?

[blondie120 in reply to Goldyukr]

Yes i do ! At first i wasnt sure if it was my tendons or my muscles but i think its both, actually feels like i cant extend my leg fully when i put it to the floor and really bad pain in the sides of my heels like its all pulling but cant extend fully , i take baclofen 30 mg aday .