I was Diag in 2003 july 15th..i understand how you feel. I am also Hyper-Thyroid as well as Bi-polor and recently diag with Thyroid eye disease...I was to have surgery for my MG but they have cancelled it 7times allready... I started Praying and getting into my BIBLE. It has helped me deal with everything... Sometimes it will get in control and I also found out that the weather plays a role on how you will feel.. Do not stress it does not helo... Find something relaxing like meditation music n videos it helps...hope this helps

Jeff,
I'm sorry it took so long for you to get diagnosed. I'm also very glad to hear the neuro who didn't share the MG info is your "last neuro". I'm glad you moved on. It sounds like your current neuro is treating you very aggressively. How often are you having PLEX and IVIG?
Cathi

Your treatment us aggresive and sounds like it probably should be. I am not in full understanding of why we would do PLEX and IVIG as a combination. Having said that, if you have several days of IVIG, you should get some relief about one full week after the last infusion. You need anything, we are here for you.

Stress is no good for anyone, so try to remain calm and collected. Don't let things bother you and focus on a belief that you will get better.

Best wishes for peace,
TJ

Thanks for the replies. I understand what you mean about relaxing. I think stressing about things does make me worse...but I also feel like when I'm not accomplishing something, I'm wasting time. I didn't always feel this way and I'm not sure if the prednisone might be affecting me.

Cathi,
I've had pretty bad luck with neurologists since I think all my symptoms have been there since high school (albeit, not so bad). The first few put me on meds that just made me worse and then I finally went to one with a top reputation, who just monitored me as I got worse and said my rheumatologist should be doing more.

When my hips got real bad, I went to an orthopedic who sent me to a new neurologist. Apparently, he new from the first visit what I had due to my eyelids, but didn't think my hips were involved. He told me to have the hip surgery and then come back. He also gave me really bad advice like, "oh you don't want to be seen with a walker, use crutches." I eventually gave up on him and switched to University of Maryland (where apparently everyone with MG and trouble walking gets a walker).

Anyway, I had the PLEX back in July, about 9 treatments, but it didn't help much, so my neurologist is switching to IVIG. She gave about half of what she could have the first time, but when I called a few days ago and said I wasn't getting better, she doubled the dose for the next time.

I'm supposed to get it next week, so I'll see how I do next month. It didn't last a full month when my last neurologist tried it, but then I wasn't on the prednisone and cellcept.

Jeff

It's too bad there isn't a "best option", no questions asked script for this disease out there. Like everyone start with mestinon, if increase in symptoms continue, get on an immunosuppresant, or steroid, or both is symptoms are raging, followed by IVIG to push back disease, and wait.....Follow new script if no improvement after a month, like increase steroid etc etc. Actually, I think that is a pretty good script I just wrote, but these doctors can drive us nuts when we become test rats etc,,We put our trust in doctors hands, but having an uncommon disease makes it that much worse. About the best we can do is to get in our own research to help make a decision on how we should be proceeding with treatments and hope we get the right neuro on the same page etc and if they aren't...Get a new one that will be

And....Getting a new one that will be is no easy task, and can take more time that our condition will allow at times.

All frustrating.

Oh, I forgot to mention in my ficticious script that the IVIG should be four to five days either consecutive, or every other day.

Ok, that's all from me.

My husband believes the predisone made me worse but I am now better. There is hope
I was at a point I couldn't move(March) and I was on respirator. June I ate my first big meal.. I am now weaning off predizone. You will get better.

Jeff,
Couldn't help but to think about you today. The predisone and not doing well really was in hand with depression for me. It honestly felt like a cold. I could have a day where I would say "today I am depressed" It was wierd. Now that I am better and the presisone is being weaned off I don't feel depressed. So if you feel depressed I belieive it is part of the disease when we are have a crisis or really weak time. It just takes so long I know. But as you look at today, are you better than you were a week ago?
Ann

I agree that the prednisone made it worse at first, but I got better eventually. Eating anything chewy was impossible a few months ago. But it gets better. How long have you been on this stuff and how much?

I know exactly how the eye patch doesn't work for you, but I was only in that state for a little while. I also noticed that the drooping eyelid would change from week to week. Sometimes on the left, sometimes on the right.

Did you get a ct scan of the thymus? If it's not big and you don't have a thymoma, many here would say to hold off cracking your chest to extract it.

And I've seen lots of people with these new walkers with brakes and wheels -- not your grandma's walker!

Good luck!