Mine is exactly as you describe!!! When it first started it was my eyelids and face.. and then a few weeks or months later it was it seemed EVERY muscle in my body (with the exception of my knees down)
After my 2nd IVIG my breathing problems (I coudlnt' even read a book to my kids without huffing and puffing before IVIG.. Only a few words would make me gasp for air and almost pass out in the weeks leading up to my hospitalization) they completely went away after my 2nd IVIG... until this past three weeks after having a nasty cough - I handled a week of the cough well, after that my trunk muscles were tuckered out!
A few months ago, I was choking on liquids, foods, drooling, and a very nasally voice.. I had a few IVIGs where they helped a little, then it would get bad again, and then another IVIG that completely took it all away again!! Now no problems swallowing at all, just hips shoulders and trunk weakness that is improving!
I don't understand it at all!! One thing that is consistent is that at the end of the day my vision is double and eyelids heavy.. especially the further away from IVIG i get! who knows!

Annie, I guess you are right. Even though I was really fatigued the rest of the day, my swallowing and chewing were normal and I had no blurred vision at all.

My swallowing, chewing and vision are the least problematic for me.

scrubbs

I have had MG for over 5 years now with many ups and downs. Lucily I have only had 1 crisis at the start of the disease.

After reading all of the responses, I agree with all of them. The one factor that seems to affect my MG is STRESS OF ANY KIND.

I find both neuromuscular diseases I have fluctuate between muscle groups, so its not just you. You have to admit that you walked into Alice's reply, though

You have to remember though that I´m one with negative SFEMG and negative antibodies tests, and don´t yet have that relationship with non-mafioso physician! So sometimes – well actually quite often – I think that I will one day post something and someone is going to come along and say ´No, Anacrusis, that long recovery from that muscle set sounds more like you were recovering from mono rather than MG´……or….´You know what? The more we hear about your symptoms the more it seems to point back to CFS!´

So I see you know heaps from all your posts about the mechanisms of disease – I wish you luck in the parental and hospital staff front. One thing I learned that works a lot – use a strategy to make them think it is their idea and not yours!

Anyhow… I am really interested and hope others are, to hear about real examples and descriptions from people - not just that ´Well yes it moves from one muscle set to another, didn´t you know?´ When the muscle involvement has moved some place else, (for example with Abby´s swallowing remission) did it go fast? Do those muscles again feel as ´healthy´ as they were before she got MG now that the symptoms are in their remission? For me, when I´m not in a long period of swallowing problem weakness, it feels like something is still not quite right….clicking in epiglottis….other sensations that are not so much symptoms, just more like gentle reminders.

If this is stuff people already know then they are welcome to move onto the next post, which is what I´m going to do right now

the IVIG fixed me completely (nothing even felt remotely odd) the 2nd treatment.. but I am defintely far from normal since that 2nd treatment... I don't think about my swallowing most days.. but it's not quite like it used to be, either is my speech.. i have certain words like "yesterday" the st hasn't been quite normal in almost 2 years.. no one else can notice it but me, but it's an awful feeling to have speech or swallowing at any risk of impairment I think. i feel like when I have an exacerbation it can "attack" any part of my body, the same or different than the last time, and sometimes it goes back to normal othertimes it doesn't.. ugh who knows! !?!?!

Our functional abilities are the combined result of:

The degree of impairment in our muscle function.

The degree of adjustment to it.

It seems that it is impossible to adjust to changing levels of impairment,but this is not true, because there is some order in this chaos.

The degree of impairment is what you would measure objectively. (if you could do that). or semi-objectively (by some form of effort dependent test).

The adjustment is by: life style changes and symptomatic treatment which does not take care of the root problem, but by-passes it.

Adjustment is sometimes tricky because it should lead to overall improvement and not improvement in one function at the price of another; Not temporary improvement at the price of crashing.