Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
Still learning about this disease. I take Pyridostigmine in doses of 180 mg 2x daily and boosters 60 mg in 1/2 to 1 1/2 pills a couple times a day. Works pretty good.
Some days thou, the dose wears off early. Does drinking ph boosted water help with this condition. Also, when I eat certain tough foods (have to chew alot), my tongue / jaw numbness comes back.
Thanks in advance for the help.
At the moment, if your only medication is Pyridostigmine (Mestinon) then nothing is being done to treat the cause of the MG. That might be OK, but the fact that you complain of numbness when chewing tough food would seem to indicate classic signs of muscle weakness. In the early days, MG can be progressive and without treatment, rather unpleasant. Actually, unpleasant even with treatment, but usually with good outcomes. Trying to be careful with what I say here - we need more information.
I don't know about the water, certainly not in relation to MG.
Take care
Peter
Results of that came back in Feb 2019. In Jan 2019, went to ER again for breathing issues related to the Flu.
In March 2019, found out about results of test and went to Neurologist. He ordered a confirmation test that stressed my muscles with electrodes and needles.
I have the antibodies from my thymus. He checked a chest CT scan i had done during one of the ER visits, the thymus is not enlarged.
I take 180 mg in AM. At 3pm, I take 90 mg. At 7pm, I take 180 mg aging.
Thanks for explaining. I am not a doctor, just someone else who has MG. Take what I say as simply being related to my own experiences. Further complicated by MG being one of those things that no one really knows all there is to know and we as individuals are certainly different with many different medical issues to throw into the mix.
Basics then. MG is a disease whereby our autoimmune system chooses to attack some of our muscle junctions by blocking the receptors. The condition usually starts off when a tipping point has been reached - simply expressed as the level of muscles receptors that have been blocked by those antibodies. Once at that point the symptoms begin to appear: you're the same as me, my first sign was also slurred speech, which I ignored. It then moved on a combination of a droopy left eye and slurred speech - at that point I was concerned - saw the Doctor, went to hospital (Eye department) twice in fact but a ice-pack test suggested MG - on to Neurology and admitted for tests. Guess I was lucky, no faffing about!
You are on Mestinon the purpose of which is to suppress the erase mechanism and allow more time for compromised muscles (blocked receptors at the junctions) to work. From that, note Mestinon is not really related to MG it does nothing to combat the cause of MG - it relieves some of the symptoms. Your muscle junctions are still under attack and generally, that means things can only get worse. Mestinon is not the answer here.
What we now need is a treatment to target the production of the rogue antibodies attacking our muscle junctions- if only. Currently, we have to make do by suppressing the whole of our immune system - and we need it to happen quickly. Remember, without treatment, our MG is a progressive disease. That usually means that we are given Prednisone (Steriod) to take in a measured dose (related to our weight). It is fairly fast acting 4-6 weeks but brings with it a raft of unintended consequences. It is in our interests to come off any dependency to Prednisone and this usually requires that we move across to a steroid-sparing immune suppressant (eg Cellcept / Azathioprine). This can take upwards of 6-12 months to work which might well mean other temporary treatments to tide you over.
Bottom line, from what you say, is that your MG has started to progress and you need to get a treatment regime in place before it gets any worse. Most of us end up with a good working relationship with our MG Specialist and that is where you need to be.
Hope that all makes sense and more to the point helps?
Peter
If you need more Mestinon to cope, that is a sign of MG progressing In that case you very likely will crash hard before long and find yourself in the intensive care unit on tubes. I agree with Peter on this completely. You are in danger of getting much worse and soon.
MG is caused by our own bad antibodies attacking our muscle receptors. We begin to have symptoms when about 80% of them are blocked or destroyed. We have very little reserve left by that time, and if you lose another 5% you probably will be in the ICU.
The good part is that these receptors can regenerate rapidly when not under attack, so we can get better soon (weeks or months) with immune system suppression, if we don't die along the way first. Dying used to be about 40% in the first year or two from MG, but is rare nowadays because of ventilating machines and direct blood treatments (IVIG or PLEX). However long stays in the hospital are not so rare when immune suppression is not started and MG progresses too far
Ask your neuro why you have not been put on immune suppressing medications while making sure the neuro is aware that you need more mestinon to function and it is not as effective.
Some folks do get by just on mestinon long term, but most of us don't. You need to press your neurologist about this now if Mestinon is not working as well or you keep needing more. We end up having an MG Crisis where we can't breathe without machines. Having been through that through under-treatment, I worry about others having the same path.
Good Luck
Russ
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2536520/
Best of luck!
Tj