end of the line
 

I saw my MG specialist today. He says there's not enough evidence that I have MG to treat me with anything but Mestinon, and there's nothing else to test me for. I could go to the Mayo Clinic, but he doesn't think there's much chance they'll be able to diagnose me, either.

This is not as bad as it sounds, because I'm feeling better these days. My neck is much improved, to the point where it's almost a non-issue (but I know neck symptoms come and go). My truncal weakness is improved, too, these past two weeks since I started taking the Mestinon again.

I am doing all the general things,too--rest, nutrition, very light exercise, stress reduction. If I don't get worse, I may be one of those myasthenics who gets by on Mestinon. If I get worse, I guess I'll go to the Mayo clinic.

Abby

Hey Abby,

Im so glad you are starting to feel better. I know how frustrating it is to have doctors say "Well I just dont know." My primary thought I had Fibromyalgia for almost a year. I wasnt convinced because my symptoms (other than fatigue) didnt match anyone even slightly. So I bugged her and constantly called with fatigue and finally she suggested seeing a rheumatologist who did blood work and came back with an antibody. I know I am fortunate for only having to go through all this for a year but its frustrating none the less!

I hope you continue to feel better and find doctors and specialists who will help you if you need it.

Peace and love,
Stephanie

Abby, I have been able to get by with just Mestinon and, to be honest, would refuse the steroids and immunorepressants if they were recommended by my doctor, and I do have an MG diagnosis. I think the nutrition, stress reduction, excercise and rest helps just as much as the Mestinon, although these things seem to take more time to help. I hope you continue to feel better as time goes by.

Thanks, everyone. I figure that at this point, since I have been doing better, I would want to wait and see how things go, anyway, before starting immunosuppressants, so his plan (or non-plan) is OK with me. If I start getting worse, there are a lot of things I could ask for: IVIG, Mayo, muscle biopsies, repeat tests...My SFEMG came back only "mildly abnormal," but that's (I keep telling him this, but he doesn't really take it in!) because he tested muscles that are only very mildly affected. The bad muscles are in my back, and he doesn't have data on what's normal for those, so he didn't test them.

I have a very stress-free summer. I cut a deal with my oldest daughter: she's taken over the cooking, housework, and some teaching of her little brother (we homeschool, and he needed some extra help this summer), and I sit upstairs and proofread manuscripts to pay her college tuition. A good deal for both of us. My husband's a teacher, so he's home this summer to help me, too. So I am getting a terrific rest. I'm trying not to think of what's going to happen in the fall, when I have to take everything up again...

Abby

By the way, Annie--if you're reading this (we don't expect you to read everything!)--he talked to me a bit for the first time about CMS. I'm 44, so it would be very unusual for it to show up so late. He says he doesn't know much about diagnosing it, and if we thought it was a real possibility, he'd send me to Mayo. But it doesn't seem like a real possibility.

Abby,

You sound like you have a good plan in dealing with all of this. I think taking care of our bodies when we are sick is extra important. I'm working on shedding about 30 pounds. :(

If you want any info on Mayo from a patient's perspective I'd be happy to tell you all about my experience.

Your arrangement with your daughter sounds great! I need to have my kids help out more too. I do way too much. All three of them have jobs. Our youngest is 17 and she helps me the most, she also works the least hours.

Take care.