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...
I was diagnosed with myasthenia gravis a year ago. I'm also addicted to shooting heroin. I am a young girl, 20. I dont have a very good support program, IVIG once every three weeks and 4-6 60MG mestinon daily. They also had me on solone (steroids) but I stopped them on my own within the first three months due to not liking what they did to me, I didn't notice a difference without them. The past two months I've cut down my heroin use from using every day to being completely sober others. Before getting high my symptoms will be bad, double vision droopy eye, bad speech, weakness, no energy, loss of appetite. As soon as I get high all of those things go away, i can see properly, speak much better, and have lots more energy and strength. Is my addiction making my condition worse? Or have I found a easier way to cope? I will be telling a new neurologist I'm seeing in two weeks about my addiction and I'm scared to what he might say. Any young people with MG please share your stories, or anyone at all if you were diagnosed when you were young and how your doing now, anything that might help me, I will be waiting to listen.
Sorry to hear you have MG and that it is complicated by heroin too.
I can't tell you what to do from the young person point of view, but as MG is not much difference in young than it is in old folks, and the treatment is the same, I think that experience might be similar.
I am curious about is your statement that your MG symptoms improve greatly when you are high. I wonder if there is a scientific reason?
I spent most of my life as a scientist, and as such, first would want confirmation from an objective observer that it is correct that your symptoms are better while high.
So, that means separating out your own view of how you are functioning while you are high and possibly not actually a reliable observer of yourself. You might ask a friend to tell you if it is true your droopy eye is better, your speech better, etc, rather than it just being your impression it is better. (we scientists are very careful to try to be objective). Another way is to actually video yourself to see that the improvement is there.
Let's assume that it is true, that you are really functioning better in terms of MG symptoms while high, and ask "is there some rational explanation why?"
MG is a disease where our immune system attacks our neuromuscular junction (NMJ) and blocks/destroys the receptor part. The NMJ works by having chemicals called "neurotransmitters" manufactured in the nerve part of the junction (something called Acetylcholine ACH) and it sent to the nearby muscle receptor (called the ACH receptor ACHR). Our immune system actually blocks and kills these receptors, so the neurotransmitter ACH can't get through to send the message. Mestinon keeps more of these ACH chemicals around longer, so the message is more likely to get through.
Heroin, in the brain, causes a huge increase in production of neurotransmitters (and the high is from that happening in the brain). However, the heroin goes through the blood stream and through the body and undoubtedly affects the production of neurotransmitters in other places -- like the NMJ. If that is the case, then more of the ACH transmitters are created and available to send messages in the NMJ too, and so our muscles work more normally for a while.
My guess is also that after the heroin wears off, our NMJ is even less functional that before, having overproduced for a while and now likely under producing, making MG worse.
I am not a neuro-biologist, and so am not sure how much heroin affects the NMJ, but this is my best guess as to why you feel better.'
Some of the basics of this are at the link
https://www.drugabuse.gov/news-events/nida-notes/2017/03/impacts-drugs-neurotransmission
And now, Chloee, I really need to encourage you to think about your future. I am 70 years old, have had MG for 5 years, got it under control and living a pretty good life even though I am so old you can't even imagine it.
If you want to have success at getting MG under control (which most folks are able to do, and go on to lead good lives), you really need to work hard on trying to get off of heroin. It will complicate your MG treatment greatly, and it will cheat you out of having a long, happy life.
Heroin addiction is very hard to beat, and impossible to do it on your own. Please get help. Life can be very good, even with MG. But it just won't work taking heroin and getting MG under control. Too many complications, and much too much long term problems. Please get some help.
Good Luck
Russ