[brandnu]

hi--I am curious if some of you could please share your personal experience/opinions on figuring out if one has MG. I have thought about it before but hadn't really looked into it. I have been diagnosed in past with CFS, FM, Sjogrens and some neck problems like stenosis, djd. What made me wonder about myasthenia gravis is I am often helped with my neck issues by putting ice on neck, at any time of year (and i live in area where we get snow). I also have the weak arms above the head, don't tolerate temperatures outside about 68 for long and can get double vision---but I don't get significant ptosis although my eyes always reflect flareups with bads or sags but not to point of serious droop ever.

so my question for you guys is could someone have antibodies for positive dx for MG without the eye droop and also could one still be able to take fairly hearty walks most days w/MG? My limitiation with exercise is I can take walks but only earlier in day or later in day as long as I rest an hour or so before doing it. I havent been able to aerobic exercise for many years as it exacerbates neck pain and other issues.

I am thinking of requesting the antibody tests to rule out...could just try the mestinon but I am chemically sensitive not sure could tolerate it.

[cait24]

Sorry you are having so many health issues. The hallmarks of MG are double vision with muscle weakness. Usually the eye muscles are affected first. They were with me. I had only occasional ptsosis. Most of the time my eyes just trembled or the muscles were jittery. One eye is noticeable more saggy than the other (eyelid, eyebrow and under eye).

There are a lot of overlapping symptoms with MG and CFS. And MGers often have another auto-immune disease like Sjogrens. IF I were you, I would ask for the ACH and Musk antibody test. If they were negative, I would ask for the single fiber EMG, the diagnostic test for sero negative MG.

My muscle weakness was always helped with ice and I can do more activity after rest or early on the day. I can not tolerate the heat at all and can barely walk any distance in the heat. I think I had MG creeping on me for years.

Does your neck just hurt or is it weak, has it dropped? Have you had any chewing or swallowing problems? Any stumbling? My MG progressed slowly until I had surgery and then I had a great exaccerbation. I saw specialist after specialist for a year until I finally got a diagnosis by going to a big teaching hospital.

I could tell mestinon was working within a half hour of taking my first pill. I have not experienced any major side affects with it and I am taking 450 -540 mg a day.

Let us know how you make out.
Good luck
kathie

[brandnu]

Originally Posted by cait24

Sorry you are having so many health issues. The hallmarks of MG are double vision with muscle weakness. Usually the eye muscles are affected first. They were with me. I had only occasional ptsosis. Most of the time my eyes just trembled or the muscles were jittery. One eye is noticeable more saggy than the other (eyelid, eyebrow and under eye).

There are a lot of overlapping symptoms with MG and CFS. And MGers often have another auto-immune disease like Sjogrens. IF I were you, I would ask for the ACH and Musk antibody test. If they were negative, I would ask for the single fiber EMG, the diagnostic test for sero negative MG.

My muscle weakness was always helped with ice and I can do more activity after rest or early on the day. I can not tolerate the heat at all and can barely walk any distance in the heat. I think I had MG creeping on me for years.

Does your neck just hurt or is it weak, has it dropped? Have you had any chewing or swallowing problems? Any stumbling? My MG progressed slowly until I had surgery and then I had a great exaccerbation. I saw specialist after specialist for a year until I finally got a diagnosis by going to a big teaching hospital.

I could tell mestinon was working within a half hour of taking my first pill. I have not experienced any major side affects with it and I am taking 450 -540 mg a day.

Let us know how you make out.
Good luck
kathie

thanks for the feedback! 'tis helpful.
I don't know if neck drooped exactly but when this first came on i felt like i couldnt hold my head up, neck felt too weak. that can still happen if i dont rest but for many years now i take breaks during day because learned lesson long ago so can prevent from feeling that lots of times.
Yes I have had swallowing problems, I prefer soft food. I used to get pills or carrots stuck in throat or go into nose, so I learend what to avoid and also to drink water with harder food or pills/vitamins.
Interestingly my problems really started coming on after I had a major surgery, something about the procedure really did me in, altho docs didnt report anything out of the ordinary.

I will try to get those tests and/or try mestinon. thanks.

[Stellatum]

Hi, I just want to add my encouragement. Get the tests. Not everyone with MG has eye or eyelid symptoms. I've had MG for three and a half years. It was two years before I had any eye symptoms at all, and then they were brief and passing. I've never had ptosis. In my opinion the symptoms you describe are more than enough to merit an MG test.

Most people with MG have a positive blood test, but some don't. If you get the test and it's negative, there are other tests, so come back to the forum and ask more questions!

Abby

[tealbingy]

I will try to get those tests and/or try mestinon. thanks.[/QUOTE]

A good neurologist will be able to get you started, and you can always move on to a neuromuscular expert if you find that your bloodwork is positive, or if further tests are needed.

Mestinon is prescription only.