Can anyone explain this??
 

Hi everyone - I hope that you are ok?

Can anyone help me with this, as you know I am struggling a little and the Mestinon Magic wore off after 3-4 short months for me! the 90mg dose seemed to make me worse and the 60mg isn't enough but I tried to stick with it.

Last week, I decided it was pointless to take something which doesn't really help and so I stopped it. I have to say, I didn't notice a great difference in my facial droop though my legs seemed weaker. After 5 days off them, I took one and it dramatically helped my facial weakness, it didn't completely resolve it but the heaviness in my cheeks went and I only had a slight drop on my top lip, movement when talking was freer and easier.......this lasted for just under 2hours before everything returned!

It is strange as this happened after I came off Mestinon for my SFEMG - before I came off it I didn't think it was helping but the first one I took after the test was like the miracle it was when I started taking it - again the effects soon wore off and after a day or 2 In wasn't noticing much improvement at all again.

Can anyone help me with this or explain what this means....or am I just completely losing it!!!! lol!!

Thank you!
Eve.x

Perhaps it just a case of relative difference.

When you haven't had any - you really notice and appreciate the improvement. But when you're taking Mestion regularly, the difference isn't as dramatic - or as noticeable - simply because the last dose is still working a bit while the new dose kicks in.

As SueV said - I wonder the same thing.. I know I have done that with IVIG.... i wasn't noticing the dramatic improvements and then it wearing off (troughs and valleys) anymore.. so thought maybe it wasnt' working.. then I tried extending it out, and quickly realized oh no, i need that.. and when it kicked in it was more obvious.. It's easier for my husband to see - when I question if it's working he will remind me how I could barely move for a while there before any treatment. .. Good luck!

As mentioned it is often easier for a loved one to notice the difference from outside. We tend to adapt our expectations.

Yesterday I thought I was doing ok and was planning to tackle a short bike ride to the garden centre. My partner said NO, not a good idea. And correctly, half an hour pottering on the balcony later, I was exhausted. I never would have made it to the the garden centre, let alone back.