Hi Ken,
Welcome! What is confusing to you about myasthenia gravis, and what do you think is causing you the most stress and anxiety?
- Nan

I know when I was diagnosed I felt really stressed out over all of it. What helped me was to read as much as possible and learn as much as possible and accept it. A year later and I don't have the same stress. It's more tolerable.

Well i had closed my business and retired was starting to enjoy it then started to see double vision had a bunch of test told me was mg pos Read up on it and now scared of a crisis

Do you have other symptoms besides the double vision? Did it take long for you to get a diagnosis?

No it took 3 weeks my neurosurgeon did a blood test sent it out to California came back positive in 3 weeks was just my eyes they put me on Prednisone seems to be working

Takes a few weeks, maybe a little more to arrive at the regime that's going to work for you, after that should be plain sailing. Most of us are lucky with MG, certainly the older ones of us, and life soon gets back to as near normal as to be expected. Could be a lot worse, that's for sure. As others have said read up a bit on it, but, beware, not all the Forums.

Just, your eyes? They are probably the most over-worked muscles we have and are often the first sign we get, in my case, it was my mouth (slurred speech) - perhaps explains a lot!

Why do you say that the older people are lucky it seems to me that at any age it sucks

Try this report

https://jamanetwork.com/journals/jamaneurology/fullarticle/774608

To answer your question more directly the symptoms of MG can vary dramatically with some people totally incapacitated with the need for 24/7 assistance, others and I like to think, by far the majority of us, virtually unaffected and well able to continue a lifestyle not that different from where we were before diagnosis.

When were you diagnosed, like I said, it can take some time to assess and from there work out a medication regime that suits your needs. That process can be quite unpleasant, but it will pass.

Appreciate that you might not feel good about things at the moment but, let me assure you I have been there - it gets better!

Wrote this earlier:


PeterL 02/17/2018
@ Galen A little late to the party but I assume you have only recently been diagnosed? Initially, the aim of the Neurologist is to bring your MG under control and Prednisone is the tool of choice as it is relatively fast acting at reducing the impact of your autoimmune system. Not a nice drug to take though. So, Prednisone is working on the cause of your MG. The next problem is to lessen the impact of the result of MG, be that droopy/closed eyes, slurred speech or whatever. That's when Mestinon comes in by giving the muscle junctions, what's left of them, more time to work. If you still have a lot of antibodies in the system you'll need a lot of Prednisone to bring the levels down and so it goes. The good thing is that at some point things do begin to work and your MG comes under control. At this point, work begins on a regime that will control your immune system, there are different ways of doing this, in my case, I take 75mg of azathioprine and 5mg prednisone, once a day, probably for the rest of my life. However, the odds are that you will still require Mestinon and often at varying levels that you will probably get to control yourself. Once you are at this stage it is called Remission. In our (MG) case remission is more like 'Under Control' given that there is no cure for MG, or at least not yet. That's my take, I'm no Doctor.

Right now I am taking 25 mags of prednisone seems to be working well on my eyes I tried mestinon but it did not work prednisone at 25 mg seem to be helping right way I don't know how long I've had it but at least 6 months I would think

By the way I read that report and it seems that at 64 I have late onset doesn't sound good to me

I don't mean to sound rude or maybe I just don't quite understand that that report but it seemed pretty discouraging for people over 60

How many people in this group live in Massachusetts I understand what you're saying and it has been getting better since my site straightened out I have a lot better perspective on what's going on it just scared the crap out of me this crisis thing Could Happen my neuro said it could generalize within 2 years span that's what's scary

Ken. I have what could be called generalised MG and was diagnosed 2008 at 65. You'll have gathered that I'm now completely relaxed about things. My initial symptoms were a little more than yours I guess. Slurred speech and drooping left eye. Fairly typical though and classed as 'Bulbar MG'. It's a rare disease and that alone makes for a rocky ride. I was lucky I guess in that it didn't take long to be referred to the Ophthalmology Department of the local hospital, fairly quick, after that with a referral to the Neurology Department. Best part of three months with various tests and changes in medication. Most of which was unpleasant and probably unnecessary in some cases - Mestinon is very unpleasant when too much is taken as is much of the associated medication. However, things do eventually sort themselves out and I really do enjoy life and have no fears for my future, nor should you.

Live in Scotland, by the way, using the NHS, totally at no additional cost to either myself or my family - lucky us!

Thank you Peter you've been very helpful but the anxiety I have is still pretty high and I worry about overtaxing myself I try to do stuff everyday but it still scares me