Hey there! I have also notices a "tic" when I take my mestinon. My neuro says it's b/c I'm taking too many, though I need them to make it through the day! I was up to 7 - yes 7 - a day a few weeks ago and am now down to 3-4 a day (the big boy included), so for Me the effects are still there and I do not need to up my dose.........
Let me ask you this; were all of your symptoms reallt bad before you had trouble breathing? Were you WEAK all the time? Did you have a "naslly" voice? Usually, breathing is the absolute last thing to go, so that's why I'm asking.........Are you still very weak? It sounds like you need additional meds right now - mestinon was not enough for me either, that's why I ended up in the ICU.........
You may want to ask your neuro if there is something else you can do to help go feel stronger - in my case it was Prednisone and IV IG
! It really made all the diffrence in the world! My palette tightened up immediately and I was able to swallow for the forst time in a long time........
Whatever the case may be, it still sounds like you are still feeling rough and need some help to get back to your old self - whether it be steroids, cellcept, IV IG or the plasma exchange.
Do you have a good neuro? A good doc makes all the difference! Mine is so amazing! He is very aggressive and does whatever it takes to insure I feel pretty decent!
Hang in there and let us know how you are doing!!!!
Erin
Quote:
Originally Posted by kpearl
Thanks everyone for you understanding, and yes it is great that this site exists.
I have a new question,
I'm currently taking Mestinon 60mg 3-4 a day, unless I'm experiencing difficulty breathing (this is what I ended up in ER with, very scary not being able to catch your breath). If the breathing is laboured I'll increase the Mestinon. Normally it has been working well for me, although when I do increase dosage I find that my facial muscles develop a twitch, but subsides after 30 minutes or so. Is this normal? Also while I have your attention, I find that the lasting effects of this medication ranges 3-5 hours, depending on how I exert myself, will it always be like this?, or will I become immune to the medication, or will I eventually take less? I guess this goes back to my original question, will it get worse?
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