Hi, Jane. Ditto on what Mike said. Also, did they run the main CMS tests? Those are blood tests as well.

If you can't drive far, that's classic MG/CMS. In fact, if you drive somewhere and socialize for a while, driving back home can be similar to driving drunk. Response time is reduced, vision is worse, and muscles are weaker.

You're not the only one who has done that thing where they think Mestinon isn't working or what's the point or I give up or whatever! The effect of Mestinon is in direct proportion to what you do. If you do a little, its effect is great. The more you do, the less impact it has.

Have you talked to your docs about the CMS tests? What about the LEMS tests?

Are you on any drugs that may be interfering with the test results? They do vary greatly over time.

It helps me to drive with my prescription sunglasses on. It reduces glare and rests my eyes. I also shoot the AC at my face, sometimes even in colder months.

Please don't be discouraged! It's really important that they figure out exactly what is going on before they throw a bunch of drug options at you.

Here is the problem, if you do have MG. Not having sufficient treatment puts you at risk. And without that, the disease does progress. I'm at a point where I'm fairly concerned about the lack of treatment and how my MG is becoming worse. Have you ever had arms so weak that they have to be rested for quite a while for them to stop shaking?

What are your current symptoms, other than what you described? Do you mind sharing?

This disease is fairly relentless. Sure, there are those who are adequately treated and can live an okay life. But there are those of us who have to reduce what it means to live just to exist every day. OMG, I'm being a bummer!!!

Call your docs and ask for those other tests. They can send them off to Mayo (Rochester, MN is the best).

I've found that in order to balance the bad of MG, I've had to up the amount of good or easy in my life. It's truly a fine art form to adjust one's life to MG. Some days, I just don't succeed at it!

I hope you and your docs can make some conclusions about what is going on soon. It's no fun to live in limbo!


Annie