Messing with the Mestinon (again)
 

OK, so I decided to try a day without the stuff. I'm still not conclusively diagnosed, and it would be helpful to feel completely convinced that the Mestinon is helping.

So, the results so far are...inconclusive. I do seem to be worse than usual without it, but not as dramatically as I'd expected. Maybe I still have some in my system. Maybe it's helping me long-term and not just symptomatically. Maybe I'm having a "good day." Maybe I'm resting too much. Who the heck knows.

Some days I forget to take a pill at the right time and get really weak. Then I take it, and half an hour later I feel better. That seemed to be the pill working. Today, I felt OK until around noon, and then got really weak. I didn't take a pill--waited a half hour--and got better. Humph.

Maybe I shouldn't be experimenting on my own, but (most of you will sympathize) my doctor simply isn't as interested in my case as I am. It's not his life. I'll never forget his laughing at me when I brought in a list of written questions. The look on his face was like, "Wow, you're really taking this seriously, aren't you!" Yup, Doctor, I am.

Abby

Are you trying to make yourself crazy? ;)

This would be a bad thing to do under at least two circumstances: If your MG is moderate to severe and if it's not stable (MG easily crashes).

Having too many ups and downs with any med can cause problems. I know you both want and need answers but I'm not sure this is the way to do it.

Maintaining a regular dose schedule really helps to keep MG stable.

What I really hope is that you get solid answers from that specialist. That would help a lot!

Your doctor sounds like the kind of doctor who thinks patients don't need to ask questions because he has all the answers. Oy.

Annie

Abby,

For some MGers, Mestinon *could* be a good way to see if your muscle weakness is from MG, but not for everyone who has it. For example, mestinon seemed to do nothing for me until I a) had a thymectomy and/or b) started prednisone. The reason I'm not sure which one it is is because I had/started both at the same time. I think it's 'b' since lots of others echo the same situation. So your weakness could most definately be caused by MG while mestinon might not work for the weakness. Not sure why this is the case, but it really seems to be that way for so many of us despite the fact that some doctors probably aren't aware of that. I know that my neuro. knows taht mestinon doesn't work for all autoimmune myasthenics (not just the musk ones) unless prednisone or PLEX/IViG are added. My hematologist knew this as well, and didn't give me a weird look when I told him that my mestinon actually works since I started prednisone, while i also experienced additional weakness while on prednisone. He completely understood this perplexing situation...I dont even understand it half the time, and get confused myself, and feel like I'm crazy! lol

Let's all hope that you get an answer as to what's causing this weakness definatively...When your function's interrupted this much, it's a situation that needs full attention and much empathy. Paralysis/paresis is no laughing/flippant matter!

Take care!:hug:

Similar story
 

Abby,
This sounds like the early stages of my life when I first found out I had a problem. The only reason they (neurologists) found out it was a form of MG was because Mestinon was making me stronger. And for the first five years I tested (as you seem to be doing) through trial and error the effects of mestinon, its side effects and advantages. About 10 years later I am actually taking 60 mg of mestinon 20-25 times a day (yes that is no a typo). Mestinon is absorbed by the body differently by different individuals therefore where some one might just need one or two pills a day I need 25. It is a huge difference in terms of my strength. My neurologist gave me the green light to test how much my body could absorb without causing crashes and I believe that you should talk to your neuro about perhaps experimenting. I am not a candidate for the prednisone which actually made me much weaker when I first tried it, so as I said MG affects everyone differently. But it sounds like you are on a good path because for me it has been trial and error and trying to figure out what works for you. The doctors will only know what you tell them and that's why sometimes their ideas may seem unimaginative or even unproductive.

Wow, that's amazing--25 doses a day! I think most people in your situation would take three pills every three hours instead, but it actually makes more sense to me your way, since the pills have such a short half-life.

I did experiment with taking more--actually (my neuro's suggestion), taking the same dose, but closer together. I found that unless I'm having an especially busy day, any closer than 3 hours apart and I start twitching all over. That makes sense to me. If it's acetylcholine that stimulates the muscles, then too much acetylcholine and your muscles start moving on their own: twitching. So I believe I've found my personal limit.

My experiment yesterday leads me to believe that the Mestinon is definitely helping me. I had a bad day without it. But, like a lot of people here, I find that Mestinon can only do so much. I do expect to try an immunosuppressant eventually.

Abby