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Anti-MuSK Myasthenia Gravis

This past December, I had all the symptoms of myasthenia but my clinic, after some blood work, said that I had a viral infection. I waited another 2 weeks and finally ended up going to the ER at the hospital.

Finally, a diagnosis

After a month’s hospital stay and many many blood tests, CT scans, X-rays, and MRIs, I was finally diagnosed with MG. I was released with Prednisone 20 mg, Mestinon 90 mg, Pantoprazole 20 mg plus Alendronate 70 mg once a week.

I started feeling better but was still not able to plan activities over 3 hours duration, e.g. shopping or working on the computer. My eyes get tired and start burning, and my neck also gets stiff and painful. I cannot go back to doing things as before. Every other day is bad.

My main problem has been sleepless nights even with Melatonin and sleeping pills! Some nights I only get 2-3 hours of sleep, and some days no sleep at all!

Anti-MuSK MG

I had a follow-up appointment with my neurologist this week and was told that I actually have an Anti-MuSK MG, a rare type occurred only in female patients.

He suggested that I can stop taking Mestinon as it doesn’t help much in my case. There are other alternatives and he wants to taper off Prednisone to 10mg in 2 months. I am a bit hesitant as I am scared of going back to the old symptoms.

Does anyone else have MuSK? I would be interested in knowing what works best.

Thanks.

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