Myasthenia Gravis and Reducing My Mestinon Dosage
Last updated: May 2023
We’ve just passed the 2 year anniversary of my thymectomy, and the results I've seen continue to impress. I'm currently on the lowest dose of Mestinon since I started treatment, and my neurologist has even given me the go-ahead to experiment with the frequency of my doses. While I do not under any circumstances recommend that anyone do this without first consulting their physician, I am thrilled to have reached this point.
Weaning off Mestinon
At my last appointment, I mentioned that even though I am scheduled to take the Mestinon morning and night, I sometimes miss 1 of the 2 doses, but don’t seem to experience any worsening of symptoms. Since my goal is to one day be totally medication-free, this has been a very encouraging turn of events for both my physician and myself.
Recently, without paying attention to it, I went 2 days without my medication. I still felt great! With that being said, I figured I’d just see what happens if I go a few more days without it. Obviously, I wouldn’t do this if I did not consult with my doctor and be extremely careful about it. Cautiously, I wound up going a full week without my Mestinon. To my pleasant surprise, I didn’t feel any different than when I was on it, at all.
Getting more active
Lately, I have begun to go to the gym. I am trying to incorporate more exercise into my weekly routine and be a little healthier. I did not plan for this to be during the same time that I am experimenting with my medication, but no time like the present.
At my job, I usually work a double (8-10 hours) at least 2 days a week. The night before working a double shift, I was planning on going to the gym. I contemplated how my body was feeling and could possibly feel the next day. I did wonder to myself, "tomorrow might be a bit too much."
I had a small inner squabble with myself. I didn’t want to feel like I failed myself or just completely defeated, but I also didn’t want to try to run before I could walk. A solid "do I or don’t I" moment. I wound up taking the Mestinon, just to prevent any worry and possible future incidents, especially while working at a restaurant.
There's nothing wrong with needing a little help
Even though I took my medication and I was comfortable with that decision, it took me a little while not to feel a bit frustrated or upset. I talked about it with my fiance and best friend, and at the end of the day I had to reason with myself as well.
I finally came to the conclusion that even though I may not need the Mestinon all the time, some days I may just need a little help. There are going to be days that are more stressful physically and/or mentally than others, so it is more than okay to admit I need a little extra assistance, especially physically.
As much as we may want to be as independent as possible, there is nothing wrong with having a helping hand or aid to assist us making it through the day. With that being said, even though we have our own health goals, we have to be confident that it doesn’t make us failures because we didn’t reach them within a specific time or at all. We have to listen to our bodies first!
How helpful is following a daily routine for managing your MG?
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