dermamyositis ptosis

[stiff19]

does anyone have myositis and ptosis or myositis and mg

[LiliaM]

Hi.

Yes I have Myasthenia Gravis and dermatomyositis. I have had MG for 30 years and DM for 7. It seems if you have one autoimmune condition you are like to get another. So here we are. I do have ptosis which is a symptom of MG. I hope you are doing ok.

[stiff19 in reply to LiliaM]

Thankyou ive had it all for 6 years but local trust been hell. I just had positive ice test and got to wait a year for another appointment. systemic issues real bad through covid and past not seen until called to give high dose steroids for 5 days it made skin clearer and a few things eased but have not been seen. my right arm is getting skinny and legs a tad but fingers and toes weak and toes dont bend and fingers when use hands dont splay.

I much appreciate the reply can you relate at all? breathing is better but flares of breathlessness 🤷‍♀️

ophthalmology mentioned a drug pyri..... (forgot the name) but a year is intolerable wait and im so fed up.

🙏

[LiliaM in reply to stiff19]

Have you seen a neurologist for your MG? It would be a neurologist that would diagnose you and put you on the correct medication. The drug Mestinon (aka Pyridostigmine) is usually the first port of call. What area do you live in?

[stiff19]

I see a neurologist who said if it was bells palsy there's nothing he could do and it wasn't bells palsy and ruled out by facial and bells palsy wouldn't come with limb weakness . I didnt see a neurologist for 6 years first one dealt with in pandemic thought mg or melkerson but he left the hospital. ophthalmology suspect mg hence the ice test which was positive. thyroid issue linked? I am in Dorset