[Robert Studebaker]

I have gMG with antibodies since early 2018. Started as ocular and rapidly advanced to generalized. I am on Mestonin, Zilbrysq and will soon be on Vyvgart as well in a test. I get severe cramps in both legs all the time and sometimes in my feet. Sometimes it is both legs at once. I have no idea if it is related to the MG but I find they occur more often after some sort of exercise, primarily just walking. I have always thought it is because since I don’t exercise any more, my muscles were just reacting to strain they are not used to. I am an ex-division one football player so I used to exercise a lot.

My question to the group is about erectile dysfunction. Not joking. Since I started taking all these drugs, I have that problem. Besides the drugs I am taking now, I’m on metformin, glipizide and insulin for type two diabetes and I take duloxetine for depression. I’m on oxycodone for my back and shoulders but I have tried stopping it, hoping the ED would improve, but it did not.

Prior to Zilbrysq, I have tried Soloris, Ultomiris, IVIG and Rigstiggio for the MG, but all of them would wear off about two weeks before I could take another cycle. When they wore off and I was not on oxycodone, is the very definition of misery.

So, if anyone has the same problem and you think you know what it is causing it, please share.

BTW, I have tried the big 3 for ED. None of them help.

 

[Robert Studebaker]

You know, I know exactly what you mean, and if you google the “medical definition of brain fog”, it describes my symptoms perfectly. However I suggest you be careful and use the more specific symptoms before you say “brain fog” to your neurologist. I told mine right off the bat “brain fog” and he immediately went off that BF was not caused by MG and he started looking for other things that may cause BF such as lack of sleep and sleep apnea. And my guy specializes in MG! To a neuro, BF is associated with other neurological issues. So when I went into detail about the symptoms, I think I convinced him, I just used the wrong terminology off the bat.

My BF always hits me in the afternoon and is really bad after In have worked several hours at my desk. FYI, I take a daily injection of Zilbrysq in the morning, early. I also take 120mg of Mestinon three times daily. The only think that relieves my BF is to go lay down for a couple of hours and sometimes I fall asleep. When I wake up however, I’m good for a few more hours until bedtime. Good luck to you.