Man oh man. I have issues. The biggest being my eyes are still seeing double and blurry, so I can't see how to start a new thread. I had more blood labs testing for myasthenia and Musk. All tests came back negative. I am taking 60 mg mestinon 3 times a day. The swallowing difficulties are much better and my eyes are better until after lunch. Then I begin to see double and things appear blurry. I have asked the neurologist to refer me to a neuro ophthalmologist. I feel tempted to quit taking the mestinon and go about my merry way, but not being able to see well in the afternoon and evenings is driving me crazy. I also can't drive at night or for much longer than 45 minutes. Rant over and so discouraged

Hi Sis,
My first blood work was neg. Then it got worse after that. Saw my neuro today and he put me back on IVIG. Been 3 years since my last one. Scheduling is going to be tough now with Mary getting 14 radiation treatments. Hang in there.
Bubba

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

I have bad double vision too. Realize that unlike other symptoms that are only caused by the MG, the double vision is a two fold problem. Your eyes and brain have gotten used to your eyes just loosing focus. Your eye muscles are out of shape and your brain let's them off the hook. You have to find a dose of Mestinon that allows you to focus as long as possible in the day. Then it is matter of your eyes getting back in shape and forcing them to focus and not zone out.


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Hi Jane, Please get in touch with a doctor who will treat your MG correctly. Many people with MG do not have the positive blood test and still present with the disease. My hubby had severe double vision, met with the neuro ophthamologist and was put on a regiment of Cell-cept. Mestonon will NOT help double vision...it only works fro the droopy eyelid. He was on both for awhile, and now is doing fine with just the cell-cept.