[Healthgirl]

I didn't want to side track the plaquenil thread because that is a separate conversation.

I have autonomic dysfunction that causes such dizziness, and fatigue that sometimes chewing and swallowing makes me feel that I will pass out.
I have to lie on the floor many times a day to get my breathing, spine, and muscles back into some sort of working order.
I feel as though I've been blowing up balloons to the point where if one didn't stop they would surely pass out. It seems to be relieved only by lying on the floor and pulling my knees in with my neck very straight. This is part of the reason I feel that I have some sort of cord compression, but of course no dr. wants to listen to me and that's another conversation.

Anyway, my neuromuscular doc wants me to take a low dose of mestonin to help with my autonomic problems.
I always get everything filled that they prescribe, have a little chat with my pharmacist and then put it on my shelf not knowing if I'll try it or not.
My pharmacy didn't have this drug and they had to order it. My pharmacist was pretty surprised to see it prescribed, but he said they are finding new uses for it. He said it is a pretty harsh drug with lots of side effects. I did not like the face he made when he looked at this prescription.
I just hate this so much. I am not giving up on seeing this as an illness that my "sick nerves" will recover from, but it's been 7 months of hell and I am not doing myself any favors being a tough guy.

[mrsD]

If you have beginning myasthenia gravis.... this may help.
The Tensilon test can be given right in the doctor's office.

http://www.healthline.com/health/ten...TestProcedure3

Perhaps you should discuss your breathing episodes on our MG forum?
They may have some insight for you.

http://neurotalk.psychcentral.com/forum77.html

[Healthgirl]

Mrs D,
I don't think I explained clearly. It's not a breathing problem or a lack of oxygen from breathing. It is more of a circulatory/nerve problem. My dr. doesn't think it's MG.

[en bloc]

Mestinon is being used now for severe autonomic neuropathy/dysfunction. The Mayo Clinic discovered and implemented this use a few years ago as the drug causes muscle contractions and this can help increase BP in those with orthostatic hypotension.

I was given a trial of this last year since my autonomic neuropathy is quite severe...as has been for many years. My BP can drop into the 60's after standing, even though I take Midodrine and Florinef.

Sadly, I never really got a chance to find out if this medication would have worked because it caused asthma attacks within 20-30 minutes of taking the drug. This is a rare, but serious side-effect/reaction. It caused bronchial spasms, but since I already have asthma, it sent me into an attack. I thought it was a coincidence the first time it happened, but after the second time I figured it was the medicine. I stopped and waited until another day and tried one last time...sure enough, another asthma attack (quite severe too).

But others have had good results with this medication, so don't discount it based upon my experience. But if you have asthma, be aware as it will increase your risk of a problem with bronchial spasms. I also had some muscle twitching, but it wasn't anything profound.

[mrsD]

To get the best information from others using Mestinon, our MG forum is a very good resource. Many people drop in there from Google to discuss symptoms when they are not getting proper diagnosis. Some end up with MG and others not. But many there use Mestinon, and perhaps can answer your question about it.

You don't need to HAVE MG to read and/or post there.

Many of them use Mestinon and can relate to side effects and dosing.

I often read there myself, as they are a fine resource.

[en bloc]

Ditto to what MrsD said. I went to the MG forum and asked about the Mestinon before I started using it for autonomic neuropathy/dysfunction. Several members were quite helpful about side-effects.