[Tom A]

Michelle     Regardless of what the single-fiber EMG test shows it seems clear — as you seem to have concluded — that you should be on prednisone. If a moderate 10mg dose of prednisone helped you as dramatically as you describe it makes no sense that you are suffering on ineffective mestinon.

For your information, I am also positive for AchR blocking antibodies, mestinon does not work for me, and 5mg prednisone does work.

Good luck. It seems a moderate dose of prednisone will help you. I hope so. If your current physician will not help, find a new doctor.

Tom

[Tom A]

Paul
You have a sad tale and a menu of issues that read like a textbook description of myasthenia gravis symptoms: ptosis, weakness, trouble swallowing, double vision, a blood test that came back positive for MG antibodies. I am not sure how any physician could not agree with you that MG seems to be a logical starting point. (And may turn out to be a logical ending point.) Your PCP may have concluded that you are “fine”, but it seems clear you are not. You live in an area blessed with the top medical experts and resources in the country. I would look at Tufts, Mass General, Beth Israel, Brigham and Women’s — any of their affiliated physicians have massive resources available to them. If you are on the other side of Boston, closer to Worcester, you can call the UMass Medical System. Any physician associated with these huge medical organizations has access to almost unlimited medical experts and resources. Let’s hope you “click” with someone you can relate to. Good luck.

[Tom A]

Here is a definition of remission: a diminution of the seriousness or intensity of disease or pain; a temporary recovery.
“ten out of twenty patients remained in remission”
You are in remission.

[Tom A]

Depression (This is horrible, I can hardly function.)
Hope (There are treatments, maybe they will help.)
Improvement (The treatment, mainly prednisone, worked.)

[Tom A]

Many of us are on prednisone which affects bone density if used long-term. That, of course, can lead to osteoporosis which increases the chance of bone fractures. So, the addition of calcium supplements when taking prednisone makes sense. I take this Over-the-Counter supplement (at my neurologist’s suggestion) twice daily: 600mg calcium+400IU of vitamin D3 in one tablet. (Vitamin D helps your body absorb calcium so, if it is not included in your calcium supplement, you may want to take it separately.) Though I do not take the B vitamins (B-6, B-12, folic acid) I have read that prednisone increases their loss from our bodies.

[Tom A]

Like so many others my first signs of MG were ocular. One eyelid drooping uncontrollably (I held it up with one hand while driving with the other hand) and horrible double-vision. I presumed I was having a stroke, went to the ER, was admitted and had a complete workup including MRI of the brain late at night. The neurologist came to see me the next day and said I did NOT have a stroke. I was shocked, what else could it be? He said I needed to see a neuro-ophthalmologist right away. The neuro-ophthalmologist immediately diagnosed MG. I was lucky, very lucky, to have a quick, accurate diagnosis. A year later, still on predinisone, now down to 4mg per day, I am in remission and hoping it stays that way.  Tom

[Tom A]

You are right, your neurologist is mistaken. How do I know? I am currently in remission! a diminution of the seriousness or intensity of disease or pain; a temporary recovery. Of course, I realize I am not cured — just in “remission!”