Still not diagnosed but Dr started me on mestinon.....
I have not officially been diagnosed. Waiting on labs. But because of symptoms, the Doctor started me on Mestinon. It seemed to help at first but now it is only helping a little but my periphial Neuropathy and it is getting worse as I take the medication. I can not tell if the medication is really working because when I feel better, is it because of medicine. I think I have a secondary autoimmune disease that causes the neuropathy. I am so frustrated at this process. Does anyone have any insight they can share that may help. Thank you in advance.
I have MG since sept 2022. I am under the care of a neurologist who is perscribing 60 mg of mestinon 4 times a day plus 30 mg of prednisone daily. I relapsed. Was good from nov 22 to aug 2023. Now i have a very very dropped eye lid and double vision in the morning. Hoping for relief soon.
hoping you find some relief soon. Please know our community is here for you. Feel free to check back in any time and let us know how you are doing. Sending many positive vibes your way. Kindly, Jessica, Team Member
I have found with Mestinon there is a fine line between too much and too little. My doctor has me on 60mg tablets 3 times a day, but for the medication to work for me I have to take 60 mg every three hours. I eat a little food before the first dose in the AM. The problem is that the MG symptoms and the symtoms of too much Mestinon are similar. I once mixed up my Mestinon with another medication and took four 60 mg tablets at one time. That experience resulted in an emergency room visit which provided a valuable experience as to what overdose symptoms are like. When I first started taking Mestinon I had more side effect symptoms that went were less severe as time went on. I think the body does adapt to some degree to this medication over time.
Hi
, we appreciate you taking the time to share your experience with Mestinon and side effects. We encourage others to check in with their doctor to determine the best dosage for them! Best, Lauren (Myasthenia-Gravis.com Team)
Thank you for the info. 10 MG cause peripheral neuropathy in the face hands arms feet and legs? Or is it possible that I have another auto immune disease on top of MG? Those are the things I’m trying to figure out. Thank you.
Yes, Myasthenia gravis can affect any voluntary muscles. If the feeling is muscle weakness and cramping-like pain, it is likely just MG, https://myasthenia-gravis.com/clinical/pain. Cramping, difficulty walking, muscle weakness, problems with coordination, or loss of muscle are characteristic of MG. If you experience:
-burning
-tingling
-sharp pain
-oversensitivity or reduced sensation of touch
-sensitivity to pain
you probably have an additional cause. Myasthenia gravis commonly occurs with other diseases. https://my.clevelandclinic.org/health/diseases/14737-peripheral-neuropathy- Jodi, Team Member
also this article I wanted to share if you have yet to see it, https://myasthenia-gravis.com/living/muscle-weakness-feeling
You probably have MG if the mestinon improved some of the MG symptoms. Mestinon does sometimes not work for certain people due to unwanted side effects or reactions. However, that is only one type of MG treatment, so no worries. When your blood work returns, if you are diagnosed with MG knowing which antibody you test positive for will help direct the course of action for treatment.
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Do you have different peripheral neuropathy symptoms that do not fit Myasthenia gravis? "In MG, the immune system attacks the communication between your nerves and muscles in your peripheral nervous system. This is the nervous system outside of your brain and spinal cord. MG damages muscle receptors, which receive signals from nerves to tell your muscles to contract. These signals are part of how the brain communicates with muscles. With fewer receptors, the muscles become weaker." https://myasthenia-gravis.com/clinical/multiple-sclerosis-differences
- Jodi, Team Member
