Hi welcome to the group,

the leg cramps are not a side effect from mestidone. generaly they are effects which take place with age, and our tendency to move more than before in bed.. sitting down ect.

i have this problem and found an exlent solution for it,, you will not regret it, get yourself a tensil hand held machine, i have one for some years and they are , what it is needed for cramps and some pain..
at th
is stage dont make much of eyes twiching, as i have done, unless they become hard to deal with, then tou and your neuro will be able to find a solution..
as for mestidone you seem to do great , so dont worry to much,if you are in minimum dose as i am 30 mgs dayli, you be in great shape.

i am at the same ,imi,um dose for the longest time 12 yrs, out of my 13yrs of mg..

with mestidone you have to be in total control of 3 major items to be having a pretty good life

1) a must total control of your emotions, stress ect, as they are the major cause of relapses.

1) sports activities and work, ect. must be conducted in modertion,, as soon you feel tired, you shoul stop, take a break, even a nape if neede

3) major change in your life style, food intakes, ect.

also i have found that taken a walk twicw dayli, one in the morning one in the afternoon, total 5 miles , will help you to keep good, for sports, i swimming is great for mg. as you can do it slow and consistant.

i ma 83yrs. old and in control of my life, if i am able to do, so can you and anybodyif you dint have your vaccine, please do, it will not affect your mg.

be safe, and good luck

Andre

Hi JonS,
I have had generalized MG for about twenty-five years. For me the very earliest signs that I am headed toward a flare are a feeling of being overwhelmed and a feeling of anger or irritation toward my spouse. These feelings usually precede a flare by about a day. It took me years to figure this out. Now, instead of focusing on my husband, I try to rest more and and make a plan for how I will deal with the incipient flare.
- Nan

Hi, Welcome to the group! Good that you are doing OK with MG. Most of us have a hard time getting treatment and figuring out the right amount to function. I took a great deal of Mestinon at first to function but eventually prednisone started working (several months) and after a year I went into remission and MG went away for 7 years. That is rare!

As long as I took Mestinon, I had vicious leg cramps. My strategy was to stretch my legs and calves every night before going to bed (doing pushups against the wall). As soon as I quit Mestinon, the cramps disappeared.

I also found that if I took most of my mestinon during the day and quit towards night, I didn't have as much a problem with the cramps. I could do that because at night I had a breathing machine for sleep apnea (CPAP) that let me breath OK without the mestinon I needed during the day.

Another side effect of Mestinon was heavy sweating if I tried to do much work. I kept supplies to wash up, deoderant and extra shirts with me most of the time.

I also got quite significant digestive issues with Mestinon and found that taking a couple of Immodium each morning helped a lot to keep things calm!

My eyes twitched too, and that went away after I was able to get off mestinon (I took enough prednisone so I didn't need it). It seemed to me that the eye twitching was when I took maybe more than I needed.

One gets somewhat paranoid in trying to figure if MG is getting worse or not. Very few folks are able to get by on just Mestinon for MG, but some do, so maybe you are lucky. I had a year on prednisone at high doses and that had some pretty significant side effects too, especially long term where it is not good to take.

For me, the first symptom that clearly pointed to MG was double vision. Mestinon did not fix that, but prednisone did. I gauged my MG returning by whether or not I had double vision as it was a clear symptom.

Good Luck and hope your MG remains in control
Russ

Thanks so much to all of you who responded to my questions as a new MG patient who needs advice about what to expect and how to respond to various situations.

One thing sure is obvious....MG triggers a wide range of responses in different people. There doesn't seem to be a common reaction or response among the group to any facet of MG or its treatment.

So far, I'm very pleased with my own treatment.... mestinon is working well, and I've now gone 2 nights using potassium supplements and have had no leg cramps. Although I'd love a vodka and tonic, I have learned that the quinine in the tonic is a no-no with mestinon. Hopefully the K supplements will continue to work.

I'll also be careful not to overdo the physical exertion. At 67, I think I've earned a bit of relief, but it's going to be hard to break myself of the mind-set that I'll always be able to outwork my Fisheries grad students in the field. We're scheduled to drag large seine nets thru mangrove swamps next week...let's see if I can remember that lesson.

At least I can now avoid the worst of my job-related stress. Having formally retired last year, I never have to go to a faculty meeting again, or respond to the astonishingly ignorant requests/demands of university poobahs!

It's great to know about this discussion group. I very much appreciate your comments and perspectives, and will try to contribute myself when warranted. I'll also get back on board with any further questions or observations as I adapt to living (well) with MG.

Thanks!

Oh, and in response to Andre's comment....
Yes, I've been fully vaccinated against Covid19. (nd shingles, flu, pneumonia, and all the standard vaccines

I am a male, diagnosed at age 65 in 2012. That age does give us more options if MG hits us hard than people who must work for a living.
MG sometimes is accompanied by other conditions that are also immune system caused, so if you haven't had tests, it is a good idea to check.
"The most common comorbidities are thyroid disease, systemic lupus erythematosus and rheumatoid arthritis." says a research study.
I have thyroid disease caused by my immune system attack on the glands. I also have hypogonadism from immune system problems. The first I knew before MG, the second after MG and having additional tests while on prednisone for osteoporosis that had been caused both by the prednisone and hypogonadism.
One of the difficulties I had with MG is that I started treatment with Mestinon only. I had to keep increasing the dose (my prescription was up to 8 60-mg tablets per day as needed) to function, which masked MG progression and in 2 months I was in the hospital trying to breathe with Mestinon having masked the underlying progression.
So, if you find you need more Mestinon to function, be sure and talk to your doctor, as that is likely a sign that you may need some kind of immune system suppression too.
IVIG treatments are quite effective and can last for a month or two (or less). The problem is that they are outrageously expensive and thus sometimes difficult to get approved if not an emergency situation.
I am trying to gently warn you that few of us with MG have a smooth first year as we try to get medications and our lives adjusted, and you really do need to be watchful for changes. The condition is quite variable in each of us, but overall the majority do find MG progresses without immune system suppression of some kind and it can land us on a breathing machine in the ICU.
Good Luck
Russ

JonS

glade to hear that you fully covered with the vaccines, for you your family and all that people you comming into contact.

as for the mg, as you can see we are all different and all caring of this deceiving deasese is intirely up to us, with a lots and commun sence everybody can control it., and allmost forgot lots of will.

this is a deasese that has been discovered since 1625, and put in the books since 1675, and as isaid manny time we will not die from mg. itself,, but from pulmonary failure, with mg, underlined.

also know that you have people, and sugestions, is the fact here in which you can rely to get good information, and sometimes sugestions

you of the thing that i sugest everybody is to become a member of the myasthenia gravis.org. which will send the weekly magaine with lots of good info. it is free

best of luck

Andre

JomS
one sentence got lost but it was the most important so i am repeting it

the most important thing not being shay to explain any pro and cons that is for you to have allways extendted conversation with your neuro, also importand having a endocrinologist as they are the ones, in charge of nedication for our functionning body, as meds work different on each of us

best of luck

Andre

Droopy eye lid is always the sign of a flare for me.

have had MG for 9 years and everything has gone reasonably well for me after I recovered from a prednisone psychoses. I am now being treated with immunosuppressant drugs (3,000 mg daily and 15 mg prednisone daily) and have received the 2 Pfizer Covid vaccine doses 2 months ago. I recently had a Covid antibody test and have been told that I did not generate any antibodies. It is as if I was never vaccinated. I wonder if there are other people that are having this experience or do not even know to get tested. They could be living with a false sense of security as I was. Can you help point me in the right direction so I can get in touch with similar MG folks? Thank you in advance.

My area doing antibody tests for Pfizer but not Moderna, so I haven’t had antibody test but my doc says that as soon as booster is recommended I should take it. I’m a country girl and most of my everyday contacts have been vaccinated. I feel like those of us with no or little response to vaccine have to rely on others to break the contact chain by being vaccinated. So far I’ve been disappointed. Just my opinion. Yes, I know that is a personal choice and I’m not slurring anyone here. So please no ranting at me from the anti-vaccine people on the sight.

This is interesting. After reading this it becomes obvious we tend to blame our flare on what is going on in our lives.
Husband issues get someone down.
Stress causes it for others. Emotional issues for another.
My husband is great and I live a very stress free retired life right now. No deaths as of now so that is good. Anyway, I recently had a very serious flare so I looked for what could have caused it. I blamed it on pollen outside.
Pollens outside? Doing too much? Vaccine? Interesting those were the things in my life so I said that must be what caused it. The Doctor said if it was gonna be from vaccine it would have happened in March. when I got the vaccine and not in June.
I always need to rest even for days after a busy day. This topic today basically helps me to see that these flares can just plain happen. Our lives are different.
Yes, I do believe stuff exaggerates it all but interesting we really blame it on what is happening around us and maybe it could just be what is happening in us. Maybe the MG is causing problems and not problems causing MG.

Exactly, Ann. Jon asked what were the earliest signs that we we going to have a flare, and when I catch myself focusing on my husband's flaws, I know to be careful (and especially kind to my beloved spouse). I have loads of other signals of an impending flare (double vision, difficulty swallowing and chewing, numbness on the ulnar side of my left hand), but those arrive a bit after the emotional displacement onto my loved one.
- Nan

Hmmmmmmm. "Maybe the MG is causing problems and not problems causing MG." :-)