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Five years ago I began having some spontaneous muscle contractions and “release” in my forearms and knee/thigh/buttock areas. Just touching my forearm could induce muscle contracting rippling. Then months later my legs got weak and I had difficulty walking and climbing up steps. I was tired. I could no longer do International travel. I did not experience any facial, oral, or ocular difficulties. My PCP referred me to Neuro and tests revealed a positive striated muscle antibody and an acetylcholine receptor binding antibody. I also had an increase in my Calcium level which subsequently was diagnosed as hyerparathyroidism and I had surgery to remove the benign tumor.
Meanwhile, I began Mestinon and had great difficulty with terribly blurred vision that made driving difficult. My muscles were still doing their contractions and I remained tired. After increasing Mestinon to no avail over about 2 years, I stopped it. I asked for a Muscle Neuro specialist in the department. (I am a Kaiser patient.) So tests were repeated with my new doc (yes, they confirmed the original MG diagnosis) and 3 years ago I started on Mycophenolate 2 gms daily and 2X monthly IVIG (80 gms total). Big improvement in about 3 months as my contractions left and muscle strength improved. For 2 1/2 yrs I remained on this regimen but I began having more tiredness overall and especially in my legs. IVIG was increased to 4X monthly (160 gms total) but there was no improvement overall. I requested a new treatment plan with Rituximab. I just had labs in preparation for that infusion and hope to start it sometime in late August.
My hope is the mono clonal antibody will suppress my immune system further so I can have a life back without excessive fatigue and legs that work so I can walk more than short distances. It’s been a pretty rocky journey and a total reversal of my former active traveling lifestyle. Big adjustments as you all know. Thankfully I have Kaiser so I am not monetarily constrained with treatment options.