Myasthenia Gravis

[outdoordreams]

Hello everyone.

I have a friend who has Myasthenia Gravis, an extremely rare auto-immune disease similar to MS. She is taking Mestinon at 60mg, 4 times a day. She uses Cannabis so that she can eat and sleep, mostly to counter act the Mestinon side effects.

Does anyone else have any experience with Myasthenia Gravis?

I read one post on another site with a person claiming with Cannabis use they stopped using the Mestinon.
Other posts stated they thought it makes the disease worse.

Thanks for your replies.

Myasthenia gravis (from Greek μύς "muscle", ἀσθένεια "weakness", and Latin: gravis "serious"; abbreviated MG) is an autoimmune neuromuscular disease leading to fluctuating muscle weakness and fatiguability. It is an autoimmune disorder, in which weakness is caused by circulating antibodies that block acetylcholine receptors at the postsynaptic neuromuscular junction,[1] inhibiting the excitatory effects of the neurotransmitter acetylcholine on nicotinic receptors throughout neuromuscular junctions. Myasthenia is treated medically with cholinesterase inhibitors or immunosuppressants, and, in selected cases, thymectomy. The disease incidence is 3–30 cases per million per year and rising as a result of increased awareness.[2] MG must be distinguished from congenital myasthenic syndromes that can present similar symptoms but offer no response to immunosuppressive treatments.

 

[The Groff]

Bumping this thread. Subbed for the future. My dad has MG and I've got loads of info to share, and also a call out to other patients.

But right now he's on a induced coma because of a sudden bacterial meningitis so I'm off to the hospital.

 

[oscarthegrouch]

I don't have mg but I do have a neuromuscular disease. Unfortunately there are no cures and few treatments for most. In my experience sometimes the treatment can be as bad as the disease. I use weed and find it helps, I stopped taking all my other meds last year I found them overwhelming. I know if I avoid caffeine, sugar, and alcohol things are slightly better. I know some people with mg go through ivig treatment, has your friend considered this?

 

[justpassnthru]

hi Outdoor Dreams; I have been around people with MG, even before there was a treatment for it. Because 'breathing' is a major factor in the disease, I'd suggest edibles and ingesting instead of smoking. I was recently tested for that disease, generally many with auto-immune disorders, have more than one.

MMJ should help, but I've not met one person with MG using mmj and probably that is due to the respiratory element. I personaly believe that marijuana ingested helps with my weakness and give me normal strength allowing areas of my body that have neuromuscular involvement to be stronger and function in an almost normal capacity.

It is unlikely mmj would work any differently for MG, I'd just make suckers, edibles and my personal 'strength' comes from toking a strain that helps and then using it in my expresso coffeemaker; I couldn't live or function very well without it; gets my day going.....
http://www.youtube.com/watch?v=5UWRypqz5-o jpt

 

[Baba2014]

I know this is a dead thread, but you didn't really get an answer.

I've been self-medicating my LEMS (which is quite similar to MG) with THC for about a decade. I also have some depression issues that it helps with. But for me it has been nothing but helpful, far less destructive than the side effects of pharmaceuticals with an underlying happy that I can't get from those either.

Also, it evens out my droopy eyelid

However, it doesn't help my dry mouth much, but that's such a minor symptom.

 

[Aliiloa]

I realize that this is a very late reply but here it goes. I don't smoke a lot of Marijuana. A quarter oz of medical MJ lasts me about 3 months. And that's because of the high quality potency of the plants that my caretaker produces. I have had Myasthenia Gravis now for 27 years. I smoke about 2 -3 times a week. It helps with the side effects of the medicine I am taking to treat MG. I noticed that I can sleep better, eat better and also feel much more stronger. But please be aware that each individual is different and what may help me with the symptoms I suffer from, might not help the next person.

 

[Aliiloa]