I have found that I rarely get the muscle cramps when I take 3 60 mg tabs per day of Mestinon and at least 1 tsp of hot dog mustard a day. When I increase the Mestinon I then begin to get bad muscle cramps so I am convinced it is linked to the Mestinon. Hot dog mustard or sweet pickle juice really helped me with foot or leg cramps and did so even before I was diagnosed with MG. At that time my feet used to cramp up but the mustard fixed that. Apparently football players keep mustard and sweet pickle juice available when playing for that very reason.

Hi Robin etal. My wife just showed me this. It may be old news for some but I thought I would post the link to a newer alternative to Cellcept and Imuran.

https://www.cnbc.com/2017/10/23/business-wire-fda-approves-solirisa-eculizumab-for-the-treatment-of-patients-with-generalized-myasthenia-gravis-gmg.html

It sounds like everyone struggles with mestinon. It's rough but it helped me continue to work (read) in the afternoon. I got tired of always closing one eye. It's interesting that no one mentioned a thymectomy. Has anyone had this and symptoms remain? I had my thymus removed a year ago. My AChR was at 177. It went down to 65 one year out. I'm off mestinon and am still working on my thyroid. Surgery was really easy.

Daisy, Sorry you have been having a hard time. In regards to all the mestinon problems I have been diagnosed since 2004 and I think I am very similar to you in my response. For me to get enough mestinon to see the positive effects I get the negative side effects (GI issues). I have worked it out with my doctor that taking mestinon is up to me, I reserve it for very bad days, or if I need to get somewhere and am having some issues. the other thing to learn is that MG is called to snowflake disease because it doesn't seem to affect any two people the exact same. I have seen that the same is true for medications, what works for one doesn't work for another, and just because one doesn't work doesn't mean another won't. They key is to keep an open and honest communication with your neurologist to get what works best for you. For me Predinsone and other drugs did not work and I am on at maintenance of IVIG meaning I get IVIG infusions every few weeks. The best thing that I did when learning and coping with the vision issues was to wear an eye patch on bad days.

As far as the blood work I believe its something like 10-20% have none of the antibodies that they have identified so far. The two most common are ACHR and MUSK there is a newer identified one, low-density lipoprotein receptor protein 4 (LRP4) I think there is one more but don't know it off the top of my head.

I’ have had MG since I was 13 years old and now I’m 31 and it’s in remission from experience ...mestinon will only help if you have ocular MG if you have The anti- musk antibody MG then prednisone will sustain you but you will have to live life within certain realms until you have just enough hold on this disorder where you can put it away for some years and live a half way close to normal life ...good luck with everything

Hi all,
Thanks for sharing Daisy, I'm glad something led to your diagnosis, though I wish it had been something much more benign. I'm relatively new to Mestinon still, I think 3 months or a bit more. I don't really remember a diagnosis date because I knew and functioned for a long time by limiting activity, naps and then adding ice packs (while working, since I work from home) and was on 4 long prednisone bursts in spring and early summer, the last 2 overlapping diagnosis. I'm seronegative, positive to muscle testing and on 60mg 4x/day. It wears off at ~3 hours and my neurologist didn't want to add more doses so she added the long acting Mestinon at night. Last night was the fifth night and I woke up often with random and varying muscles cramping along with what I know are fasiculations. I've had little in the way of GI symptoms but those are clearly beginning. I'm supposed to take my 4 Mestinon today but am currently grateful I missed one yesterday! It's 10 now, I can feel the effect of the long acting is fading a bit, but am a bit nervous. I plan to take halves today at 2-4 hour intervals, see how it goes, and maybe go to my in-public work meeting, maybe not.
I can see that the meds help but it's been 3 months to get to this point. My Neuro has been very explicit about the dangers of going up too fast, so I just keep ice packing on bad days. Work did change my schedule so I work with a 2-hour break between blocks and yesterday was the first time I've not taken a nap and did fine. I do not assume it will be the same all week but I'm sure progress is the name of the game.
I have learned that a lot of things make for a bad day, including getting sick (Wow), but now that I'm getting to side effects from the Mestinon itself it makes me a bit nervous. I'm also trying to figure out how to manage getting to the gym - I plan to give it a go shortly before my next appointment and see what happens, then discuss. I sit all day for work with few breaks and think exercise will be increasingly important....somehow.
Daisy I hope it helps to hear dose adjusting helps, over time, so you get to a point of more functionality. Stress is always a factor and I'm sure there's ongoing post-Irma things to deal with, plus life-stress.
If anyone else has more on how to deal with muscle cramps or the fasiculations I'd love to hear those too!
Take care everyone,
Laurie