It's hard to give advise.
But, from the way you describe it, your illness is refractory to treatment.

There is no right or wrong approach.

People with refractory disease can either try experimental or semi-experimental treatment or choose to come to terms with their illness and receive symptomatic and supportive care.

Each approach has its potential benefits but also its drawbacks.

The same person can change their approach at different times.

I personally chose the option of symptomatic and supportive care at this point. It fit both mine and my neurologist's preferences.

I take ventolin, mytealse, Coenzyme Q10, L-carnitine , alfa-lipoic acid and vitamin B12. I also try to eat as much fresh vegetables as possible. I use tools and aids that help me function, I require assistance in some activities and receive respiratory support as required.

With this treatment my illness has somewhat stabilized and stopped becoming worse and possibly even had some slow gradual mild improvement. (over more than a year of this combination).

I may decide to try Rituximab at some point (even though I am aware of the potential risks for me), but both me and my neurologist decided that we want to have more evidence for its efficacy in my type of MG before we decide to take this risk.

I have been extremely ill and haven't yet recovered following treatment I received 4 years ago. This may possibly be a factor in my more cautious approach. As is the fact that there is very little data regarding effective treatment in MuSK MG. It is much easier to decide to take a risk (for both physician and patient) if you know that there is a very good chance for recovery, then if there is no such data.

I am very fortunate to have a neurologist I can discuss this with and reach together with him decisions that we both feel comfortable with . He is also there to support me during less good times .

No doubt that this is a hard decision to make.