Hi all- I've had MG since 2000. Had a thymectomy,went into crisis 6 mos later. Since then, have been on Mestinon and Imuran . During crisis, was put on a very high dose of prednisone which didn't help..finally 6 rounds of plasma exchange did the trick. I've had some ups and downs since then which have been handled by rest and increased dose of Mestinon. For the past 5 weeks or so, have been feeling worse than usual- first palate weakness, then arm weakness, back to palate weakness, now arm and leg weakness. I stopped working in 2001, and do try to take it easy and listen to my body. Aside from rest, rest , rest..is there anything else to really do? the increased Mestinon helps slightly. It's so strange- you start to feel almost normal and think that this setback is coming to an end..then its back, worse than before. Very frustrating..can hardly walk my dogs, or even get together w friends since my palate gets weak from talking. How do you guys handle it? Thanks for 'listening'!

Sorry you are going through this. It was hard for me to learn that even though Mestinon made me feel better, it did not mean that I could do more. It took me a long time to realize this, that every time That I felt good and did more, I had an activity "hangover" that made me weak for days. So now I pace myself and schedule an activity only every other day and do a full day of rest in between.

Lowering your life expectations is very hard. I find having a routine helps, even though that routine does not accomplish much. I can only do a short walk with my dog on good days. I play fetch with her from the recliner, the dog has adjusted to my inactivity. I have some sedentary interest such as knitting and sewing that I can do for short period during the day.

I spend more time trying to prepare healthy nutritious foods. I connect with friends over the internet and phone. I try to make my activities really count, something I really enjoy.

Hope this helps
kathie

Hi, Susanj. Welcome to the forum!

I'm sorry things are getting worse for you.

Have you sat down with your primary doctor? There might be other things that could be making your MG worse, like a thyroid disorder. Other things that are common are B12 and D deficiencies. Has your primary doctor looked at your kidney and liver functions lately? Overall chemistry, like electrolytes?

Did your doctor test you for the TPMT enzyme before putting you on Imuran?

http://emedicine.medscape.com/article/1829596-overview

Perhaps Imuran doesn't work well enough for you. Do you have a neurologist that you feel confident in?

It's such a hard balance between doing things and getting weaker. Even though I know my "pattern" of weakness, MG still surprises me.

Maybe take a look at any factors in your life right now that could be making things worse. Do you drink too much coffee (caffeine does what Mestinon does, to some degree)? Are you stressed out? Getting enough sleep?

I don't do well on a regular basis. I'm finding it very hard to cope with just the necessary activities every day like washing dishes and making meals. But what I do is to set myself up for success. I sit whenever possible. I stay coolish. I sleep whenever my body tells me to. I alternate activity with rest. I stay the heck away from any stress. You really have to streamline your life to deal with this stupid disease.

I hope you can figure out if there is something else going on making MG worse. Take it easy!


Annie

Hi- thanks so much for your replies. I have had the liver , kidney and thyroid tests done pretty recently. Have been on Synthroid for 29 yrs, but thats controlled. I really do try to pace myself and be careful- was very stressed shortly before this exasperation began, but have really made an effort to relax- thought I'd bounce back, but not yet! I guess I've been spoiled..after a very bad crisis early on and a few times of feeling lousy over the years (not for this long), I've been limited, but managing to do my meager activities. My neuro finally called me back - I have an appt for the end of MAY..give me a break. I don't love him, but don't know anyone better in NJ. Have been on Imuran for many years- don't know about that enzyme test- will ask.
Don't get me wrong - I am greatful for what I can do, and do continue to try to do things that I enjoy. I'm glad that you guys do the same. Take care, and stay strong. Thanks again- Susan

MG is just difficult. For some people, it literally means a life with not much of a social life and balancing every activity with rest or sleep. Or drugs. I am sorry things are so bad for you right now.

I still think a trip to your primary doctor is in order. They can also run the TPMT test.

Like I said in your other post, call your neuro. I hope you'll get better.


Annie

I noticed that Annie mentioned that having too much caffeine can cause problems, but usually around three in the afternoon I have one cup of caffeinated tea. It helps me get through the rest of the day. Over doing the caffeine can be bad, but just a little bit might help you carry on a conversation.