[Anacrusis]

I am taking Mestinon on a symptomatic basis.

Eyes: (works consistently)
It works after 20 minutes increasing close-up focusing by 20-30 cm and double vision/unclear distance vision clears up completely for some hours.

Breathing: (consistent)
I still can´t get over the power of a little pill to restore diaphragm weakness to automatic gear.

Deltoids: (very inconsistent)
Alters physiological sensation of and also increases number of arm lifts by 70%.

Trunk muscles: (no effect)

Swallowing muscles: (no effect)

Other non-myasthenic muscles: (no effect)

The bulbar symptoms are what bother me the most at the moment and I wonder if what that means is that it might take a stronger medication to tackle these remaining symptoms which Mestinon isn´t reaching - or if it is simply a case of Mestinon going wherever it pleases in addition to our muscles behaving unpredictably on the receiving end.

Thanks if you know anything about this,

Anacrusis

[rogerm213]

In my brief 5 days using mestinon. I find it is helping my hands and opening my eyes but not clearing double vision. My legs seem quite a bit stronger but I am still getting winded if I do things quickly or try to do too much.

My problem is I was instructed to only take it at meals 3X a day and I wake up feeling like I was run over by a truck and it is lunch before I feel somewhat right again.

[StephC]

Rogerm for me the
Timespan at night helpled alleviate a lot of (not all) of the starting over feeling in the am.

[hajile99]

When I first started on Mestinon (60mg 3x), I had an immediate increase in my energy. It helped with my chewing and speaking issues, and I also had more strength in my arms. It also seemed to help with the droopiness in my eye, but never touched the blurriness or double vision.

Rogerm- I'm on Mestinon 3x a day too. My doctor didn't specifically instruct me to take it with a meal, but the issues with my chewing I was experiencing, I would time it about 30 minutes prior to eating each meal. It was the only way I could even think about eating, otherwise I didn't have the strength to bite through a piece of wet spaghetti. Thankfully, the IVIg treatment I'm on seems to be helping even more than the Mestinon, so I've been able to be a bit more lax about when I take the meds.

[alice md]

To the best of my knowledge there is no study that systematically looked at the effect of mestinon on patients with myasthenia.

In fact the use of mestinon (and similar medications) in myasthenia is based on a study on 1 patient.

For many years it was considered the ultimate medication for MG (in fact the diagnosis of MG was doubted in patients who had no response to it, and many neurologists saw a response to tensilon as enough to diagnose MG).

Some patients do not have a response to it.
Some patients even have worsening with it.
Some patients have an unpredictable response to it.

Why does it effect different muscles differently?
Why does MG effect different muscles differently?

Why are there days in which I have ptosis of my left eye (relatively good days), days in which I have ptosis of my right eye (relatively less good days) and days in which I can hardly open both eyes?

My neurologist told me about a patient who had severe generalized MG with mild ptosis of the left eye. After receiving treatment with PLEX she had significant improvement in all her symptoms, but developed significant ptosis of the right eye. Why?

But, being practical (and putting the academic discussions aside).
If you have found a medication with relatively few side-effects, which helps you function better (at least in some aspects) take it.

Don't expect it to be a miracle cure, just a good symptomatic treatment to make your life easier and better.

[AnnieB3]

Anacrusis, If you have a mild headache and a sprained ankle, acetaminophen might get rid of your headache but not the ankle pain. It's basically the same with Mestinon, though it can get more complicated than that.

For some people, Mestinon doesn't do squat for the eye are muscles. Only Pred does. For me, it helps to a point but the more I do, the weaker I get no matter how much Mestinon I have. Mestinon is only a helper drug and is not a CURE!

Also, the smaller muscles, like those in the face/head/neck, tend to show up weaker in the initial course of the disease. The "work horse" muscles of the arms/legs/trunk tend to take longer to weaken (though that's not true in everyone) but then they can tank for longer too.

My eyelids are the first to go but also the first to recover when I get weaker. My eyelid, eyebrow and facial ptosis are my best indicators of how I'm doing. If my eyelid ptosis doesn't recover with Mestinon and rest, then I know I'm in need of more rest and drugs. But, again, everyone is different. When I'm "double drooping" as I call it when both eyelids are really bad, my bed is the only place I'll be.

For example, if you overdo things one day, it might take a day or more to recover. If you have an MG crisis, it can take much longer to get better. It's not only what you "supply" MG with - like Mestinon - but what the muscles "demand" to have in order to work. Make sense?

And if you take too much Mestinon, you can actually overdose less weak muscles while you are trying to alleviate the weakness of weaker muscles.

No easy algorithms here in MG land. Just trust your instincts and try to have the best balance you can.

Annie

[Anacrusis]

Originally Posted by AnnieB3

And if you take too much Mestinon, you can actually overdose less weak muscles while you are trying to alleviate the weakness of weaker muscles.
Annie

Thanks for that Ms Annie - Another also highly experienced member from a different forum gave me an interesting theory in that she suspects that the weaker muscles are more affected by antibodies. Her theory is that ´Embryologically cells know by position which genes to switch off and on, and so not all muscles are exactly alike and we may be set up embryologically for problems with certain kinds of muscles´........Fascinating.......

Good luck carving your pumpkin! - and a long rest between each incision!!!!!

[alice md]

My neurologist has a patient with Parkinson's disease, who has symptoms of too much medications on one half of his body and too little on the other.

But, at least it is consistent.

With MG it can go from side to side.

A bout of exercise can lead to a dramatic change in the expression of various genes in the muscles. (the on-off switching you talk about).

mitochondrial dysfunction (which appears to be part of the problem, at least in some MG patients) can significant alter this normal process.

Different muscles have a different ultra-structure of their fibers. (there are fast fibers and slow fibers. there is a different pattern of innervation etc. ).

etc. etc. etc.

[alice md]

No easy algorithms here in MG land. Just trust your instincts and try to have the best balance you can.

I fully agree with that.

[southblues]

Originally Posted by alice md

Different muscles have a different ultra-structure of their fibers. (there are fast fibers and slow fibers. there is a different pattern of innervation etc. ).
etc. etc. etc.

I really wish that I could understand the asymmetry of this problem. Why is my right side so much worse than my left? I can understand that eyelids are inherently weaker than legs and therefore would be more problematic. I just can't understand the asymmetry. I can't understand why my right eyelid closes, my right eye is blurry, my right leg is weak, etc.