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What is normal variability?

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Old 07-17-2018, 08:40 PM   #1
LeeMac
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Default What is normal variability?

I'm very new to MG only being diagnosed rather skeptically about 4 weeks ago. Mestinon is hugely effective but I can't take much before I get cramps and itchy.

My question is how much variability is "normal?" The double vision is fairly consistent but other muscles seem to vary greatly from day to day. Some days it's my legs, others it's my voice and swallowing, and recently breathing which eventually passed. I understand it can vary, but I guess I expected that at least which muscles would be affected would be somewhat consistent.
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Old 07-19-2018, 02:34 PM   #2
wbdolphin
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Default MG variability

The variability and inconsistent symptoms are pretty much the indicators of MG, varying weakness and symptoms depending on what you did or didn’t do in a day.
The muscle cramping might be too much mestinon, but as time goes on you’ll probably be able to play with the doses, finding out how much you need or don’t need. I would let your doctor know about the itching and cramping, in case it’s a reaction.
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Old 07-19-2018, 02:58 PM   #3
winic1
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At the very start, I was cutting the 60mg pills into quarters, and taking 1/4 at a time, which was enough. After a few months, then it was 1/2 pills, and then whole pills, as I guess my body was adjusting to it and the need for more.
Now, I take whole 60mg pills as often as every 3 hours, if having a busy day. If I take it sooner than necessary, I can end up cross-eyed and a bit dizzy and queasy (mostly from fighting against being cross-eyed).

Not that I'm advising you to mess with the dosage on your own, but I have always found that lots of little doses serve me much better than less-frequent larger doses, with any medication, not just mestinon. The pills are scored, so maybe talk to your doctor about trying something like this? Went through a phase with lots of muscle cramping, at night, but that seems to have pretty much stopped, and think it might have also had something to do with being slightly dehydrated at night (and if your guts are running faster, like it might do, then they're taking more water out of you in the process, so an extra drink before bed is not such a bad idea).
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Old 07-20-2018, 09:48 AM   #4
rosepointe
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I was diagnosed about 1.5 years ago. The Neuro Op started me on Mestinon gradually to help my body adjust. I think it was 30mg for a few days or weeks I forgot and then 60 3 times a day. My symptoms went away for months and this past January I had begun to have speech issues. I find that anytime I am upset or sick my symptoms increase. The doctors have told me to expect variations. I take 60mg 3 times a day unless I am at a social event and I have been told to go up to 90mg which I sometimes do once or twice a day but never in less than 4 hours.
I could only drive short distances with a patch when I was diagnosed and my eyes were horrible with night light and most of that is resolved. I have not had to use a patch (yet.)
Hang in there.
Karen
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Old 07-20-2018, 01:24 PM   #5
AnnieB3
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Hi, LeeMac. How are you?

MG experts are very quick to point out that the only thing predictable about MG is its unpredictability. However, after a time, MG patients can usually tell what their specific variability is. But don't be fooled by that. MG weakness can come one so slowly that even people who have had the disease a long time can be surprised by it.

If someone is right-handed and they use their right arm a lot, for example, those muscles will become weaker. The rest of the body might not be.

If a lot of muscle groups are used (we have 640 skeletal muscles that can be affected), an MGer will have generalized weakness. Socializing uses a lot of muscles, especially breathing (chest wall) and speaking (bulbar) muscles. I have a hard time doing that at all, or for very long. Now, this isn't the same for all MGers, but I tend to wake up choking or unable to breathe well after doing that during the day.

Alternating rest with activity will help keep MG on an even keel and not on a roller coaster ride. Recovering from being slightly weak is far easier than being super weak. The recovery time is also longer the more weak one becomes.

If someone has a MG crisis, the recovery period (after more drugs) is even longer. It took me over a month to recover enough to walk well when I had mine in 2005.

The important thing is to get to know how your body does with an activity. Do one activity, and then note the patterns. Do you become weak right away? Hours later? Does the weakness continue into the next day or two? Again, the longer the time to recover, the more one needs to rest. I tend to see effects of an activity up to two days later. But that's me, and others might be different, especially depending upon what drugs they are on.

Of course, if you add lack of sleep, heat, stress, infection, certain drugs, or other stressors into the equation, MG becomes worse even if you're just sitting around!

There is no perfect algorithm for MG. I think that is the most frustrating aspect of the disease. Knowing what we can do from hour to hour, day to day, is almost impossible—unless someone's MG is well-controlled with medications.

I hope you can find your "normal" and live well with any changes!

Annie
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Old 07-20-2018, 08:42 PM   #6
LeeMac
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Thank you everyone. The suggestions and sharing your experiences helps a lot. One thing I am quickly learning is that you have to stay ahead of the fatigue. Trying to push through and rest up later is not something that works for me.
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