Myasthenia what?
I have been dealing with chronic Lyme disease for several years and have had different types of pain so I thought the weakness in the left side of my mouth and tongue was either another symptom or I was having a stroke. While in the ER thorough testing and blood work showed possible MG. That all happened in April this year 2022 and since then I have had symptoms when eating and especially at a get together when I am speaking to someone. I have been prescribed Mestinon by a neurologist and taking 30 mg twice a day. I have also changed my diet and eating more fruit and vegetables and have eliminated eggs, dairy, gluten and sugar but I’m not sure how long this will last.
MG hits hardest when eating, talking, anything repetitive. Mestinon helps, but finding the right dose is key. Diet’s good for overall health, but MG plays by its own rules
Hi Chuck. I have to respond to this because I, like many others, was treated for Lyme disease and related Bell's Palsy for two years before I was finally tested and found positive for MG. Lyme is a great mimic and because most doctors have never seen MG, Lyme is often falsely accused. Like you, my MG was confined to my head (eyes, mouth and tongue) for several years before one day my head just fell over. Not kidding. My neck would not support it and I had to carry it around with my hands. Arms and legs went soon after, Try to find a neurologist with lots of experience with MG. There is a simple blood test for the acetylcholine antibody. If it's in your blood, you have MG. It sounds to me like you are in the early stages and should be prepared for more symptoms. Every voluntary muscle in your body can be attacked by the antibody. The Mestinon you take is great at controlling the effects of the antibody for a few hours but does nothing to address the production of the antibody. A great neurologist will become your best friend.
I appreciate your message, thank you but continuing with the Lyme mimicking theory I finally found a Lyme literate PA two months ago who is sticking to the possibility that Babesia could be my primary problem. She has put me on three antibiotics and several supplements for detox and seems to think I will see a good change in several months. I am also seeing a neurologist who claims to know about MG and is monitoring my symptoms. I continue to take mestinon 60 mg 3 times a day and have had minimal symptoms to date . I wish you the best. That all sounds great, Chuck. You're getting lots of doctoring. Your mouth and speech issues are so eerily familiar. But if you have MG, the mestinon dose should keep you on your feet. You have my best wishes.
Thanks for sharing!
Jodi, the Lyme is for sure, several tests over the years have been positive . I thought maybe the Lyme was mimicking MG. After reading your message I am hopeful thank you
How did your follow-up go today? - Jodi, Team Member follow up went well thanks for checking. No change in the amount of medication as long as symptoms stay the same. Stay well!
