Mestinon and Magnesium?

[Peajay69]

I have very severe ME. Does anybody know if it's OK to continue supplementing Magnesium while on Mestinon? I'm currently taking 20mg X 4 a day and getting quite severe muscle twitching. I previously injected Magnesium Sulphate weekly but have recently stopped due to hearing conflicting opinions on this. My last red cell magnesium test was high/normal, but now I am worried about the muscle twitching.
I'm aware that people with Myasthenia Gravis (I tested negative in Neurology for MG) are not meant to take Magnesium, but not sure if the mechanisms are different with us
My prescribing doctor hasn't mentioned it at all but pharmacist has said not to supplement with Magnesium.
Any info or papers describing this received gratefully.
I've written to Dr David Systrom himself to ask his opinion.
Many thanks.

 

[YippeeKi YOW !!]

Hi @Peajay69 ....
Are you taking Mestinon for myasthenia gravis, or for aspects of ME/CFS?

 

[Peajay69]

HI - I'm taking it for ME and tested negative in Neurology for MG - I'll edit my post to make it a bit clearer

 

[YippeeKi YOW !!]

I think that the warning against iodine with Mestinon is directed mostly at those suffering from MG, but not dead certain.

Do a quick google and see what you can find. I find magnesium (I use mag glycinate for a lot of reasons, will be happy to elaborate if that proves to be of interest to ya'll) invaluable and would hate to see you deprived of its many benefits unless absolutely necessary.

 

[Pearshaped]

I couldn't find anything about it in the Mestinon manual,
so I have checked it online but couldn't find anything APART FROM the fact you mentioned already earlier:
"Mag can worsen Myasthenia Gravis."

So it seems the caution with Mag is regarding Myasthenia Gravis.

Definetely check again with your Pharmacist.

Have you checked other electrolytes to be low?(potassium,sodium)

 

[lenora]

Yes, please check your electrolytes or you could be thrown into something known as Autoimmune Encephalitis, which seems to be caused (big "if" still on this one) by electrolyte imbalance.

I know, it leaves you reluctant to try anything as far as supplementation is concerned, and has certainly left me feeling burned (this was my 5th hospitalization for the same problem since May). Personally, I don't think the answers are partially even in yet, but I would talk to your main doctor about this and see what he/she has to say. Also, prior to talking to the person, kindly send them any Research papers you may have read concerning your particular problem. You may have to remind them to read. Actually, I would recommend (not that you asked!) that you send them together, and do it at least one wk. prior to your appt.

I've been told by various physicans' assistants, nurse practitioners', etc., that they do appreciate receiving the material, even if it means extra work for them. They just need enough time to wade through it all. They will, in
turn, give it to your doctor to read if they feel it will help them make a decision. Good luck.

 

[YippeeKi YOW !!]

please check your electrolytes or you could be thrown into something known as Autoimmune Encephalitis, which seems to be caused (big "if" still on this one) by electrolyte imbalance.

I've never heard of the connection between electrolyte imbalance and autoimune mediated encephalitis before, altho patients with autoimmune mediated encephalitis do generally develop hyponatremia as an effect of their illness.

Could you cite the source of your info re: electrolyte imbalance as a causative factor in either autoimmune mediated, or autoantibodies mediated, encephalitis? Am really interested in this ....

My dad had demyelinating encephalitis, so this has been a subject of some interest to me for several decades, and I can't say that I've ever come across this connection. Would be interested in your input.

 

[YippeeKi YOW !!]

So it seems the caution with Mag is regarding Myasthenia Gravis.

That's my impression as well. There doesn't seem to be a direct negative magnesium connection to Mestinon itself, just the disease that it's most often prescribd for.

 

[DrUniverse]

Muscle twitching is an adverse effect of Mestinon.
Mestinon + Magnesium is hell for MG patients as it potentiate. My Mum can tell a lot of stories about that.

Without MG there shouldnt be a huge problem.

 

[lenora]

I've never heard of the connection between electrolyte imbalance and autoimune mediated encephalitis before, altho patients with autoimmune mediated encephalitis do generally develop hyponatremia as an effect of their illness.

Could you cite the source of your info re: electrolyte imbalance as a causative factor in either autoimmune mediated, or autoantibodies mediated, encephalitis? Am really interested in this ....

My dad had demyelinating encephalitis, so this has been a subject of some interest to me for several decades, and I can't say that I've ever come across this connection. Would be interested in your input.

Hi.....,It looks as if I never got back to you on this, my apologies.

I don't know where I read it, actually think it was told to me by one of my multitude of doctors at the hospital; my neurologist if I'm correct. I don't have anything to send to you to you regarding it and, like I said to the woman I was writing to, a lot of things still seem to be up in the air about this illness. Make no mistake though, even if it's new, there's something to it and it has certainly dragged me down from what I had been before it occurred. Mind you, I'd been fighting it off for mos. and that could tire anyone out. I'm feeling discouraged about not going anywhere except to the doctors, but that's coming to an end and soon. The last place I want to be is at someone's office if the cornavirus is actively looking for someone. Uh, no thanks, I'll take my chances.

I don't get out much, but once/wk. certainly beat no times at all. I'm sorry about your father, especially the worry for so many years, but I really can't help you beyond what I've said. If I read anything at all, I'll be sure to let you know. Yours, Lenora

 

[YippeeKi YOW !!]

I'm sorry about your father, especially the worry for so many years, but I really can't help you beyond what I've said.

While waiting to hear back from you, I've checked out the connection between electrolytes and autoimmune mediated encephalitis, both thru the Univ of Google and thru one of my cousins, who's been a medical researcher and a doctor for a couple of decades, and there seems to be absolutely no causative connection between electrolytes and autoimmune mediated encephalitis, or its cousin, demyelinating autoimmune encephalitis, except possibly the hyponutremia I already mentioned, which is a result of the illness, not a cause.

Thanks for getting back to me tho, I was wondering if you were OK. Glad to see that you are !!!