Unusual MG Symptoms?

I really can't complain. I was diagnosed in early '22 and had quite a bumpy ride for the first couple of years but have been pretty satisfactory since I started on Mycophenolate a little over a year ago. My symptoms were initially optical with pronounced ptosis and erratic/episodic diplopia. Like a lot of people with ptosis I was immediately tested for stroke and then referred to a neurologist. I also had initially problems with chewing and pocketing of food, but my initial neurology resident dismissed that. I was put on mestinon and prednisone which helped but I was still having occasional flares that impacted my ability to do things I previously could. I found a new neuro-muscular specialist and finally weaned from predisone after almost two years but had the problem with pocketing and some slurring of speech and was put on Mycophenolate which has worked phenomenally so far.

Hi Josh, just keep an eye on your symptoms, neck and shoulders are common. I was similar to yourself, with only one or two symptoms to begin with and then I began feeling my neck and shoulders aching. Then suddenly, whilst showering, I turned my head and I felt a loud crunch in the back of my neck, and I couldn't move my head for a minute or so. It did improve a little, for a while, but then began slowly worsening.
However, everyone with MG experiences different symptoms and at different levels of discomfort, so it may well not be the same for you.
My advise is as follows:

Grab a diary, and each month write down ANY issues you have.
MG symptoms creep upon you slowly and you can easily find yourself just putting up with them.
Keep looking back through your diary, to make a comparison in order to really see if you are stable, or have gotten worse.
If you are worsening, DEAL WITH IT, and take action.
Do not simply take the word of consultants and doctors, telling you its arthritis, or whatever, and do not start doing neck exercises or physiotherapy. It will worsen the situation.
Only you know your own body.
I wish someone had given me this advice 3 years ago.
There will be something out there for you should you worsen Josh, but you need to take action yourself, and not just rely on the word of healthcare professionals.
Fortunately for me I eventually came across Vyvgart, and it was a game changer, so if your condition should worsen, with all the new drugs available today, you WILL get it sorted, but in my experience, the little niggles that can appear, WILL very likely be MG connected.

Stupid MG! I started out with not being able to open my eyes, then it went to double vision, and I am about 50/50 vision right now. I've had something weird lately and am wondering if it has anything to do with MG. I am INCREDIBLY sore ALL over, but both knees, neck and back are the worse at present. I would like to go back on Cellcept I think. God bless you and feel better, ok?

Shortly after I was diagnosed with MG I came down with Polymyalgia Rheumatica. Polymyalgia is a symmetrical disease meaning it attacks the same part of your body both sides. Mine manifested in my shoulders, wrists, hands, neck and hips. It is very painful. Just be aware, but if only one side of your body hurts it’s not Polymyalgia.