Tom A replied to the topic Diagnostic criteria in the forum Healthcare and Myasthenia Gravis 1 month, 3 weeks ago
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 Ac…[Read more]
Tom A replied to the topic Hey all! in the forum Additional Resources 8 months, 3 weeks ago
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…[Read more]
Tom A replied to the topic Remission?? in the forum Healthcare and Myasthenia Gravis 8 months, 3 weeks ago
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 replied to the topic Describe Your Journey With MG in 3 Words in the forum Hacks, Suggestions, and Tips for Living with Myasthenia Gravis 9 months, 2 weeks ago
Depression (This is horrible, I can hardly function.)
Hope (There are treatments, maybe they will help.)
Improvement (The treatment, mainly prednisone, worked.)
Tom A replied to the topic Over-the-Counter Medications With MG Prescriptions in the forum Nutrition, Supplements, and Exercise 9 months, 4 weeks ago
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…[Read more]
Tom A replied to the topic First Signs of MG in the forum Hacks, Suggestions, and Tips for Living with Myasthenia Gravis 10 months, 2 weeks ago
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…[Read more]
Tom A's profile was updated 10 months, 2 weeks ago
Tom A replied to the topic Remission?? in the forum Healthcare and Myasthenia Gravis 1 year, 1 month ago
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!”
Tom A became a registered member 1 year, 3 months ago
Hello, Mervin! We are thrilled to have you as part of our inclusive and judgment-free community of MG patients, caregivers, families, and medical professionals! Within the Myasthenia Gravis News Forums, we implement a safe space to share and discuss experiences, information, and news and offer guidance and support.
Please familiarize yourself…[Read more]