I had to diagnose myself and after I did he gave me mestinon and sent me to my neuro. The neuro prescribed my a round of IVIG and to start Cellcept. I wish I would have started both right away because I was concerned about doing anything to help myself for fear of hurting myself. I wasted weeks messing around on mestinon only and started collapsing to eventual serious weakness (basic paralysis).

I am much better now. I just wish I would have taken the meds right away. Put your best foot forward!

Safe travels and good luck!

TJ from CA

I found at first fear was my biggest enemy. I found I was more upset with "what ifs" than anything.
3 hours is worth 20 minutes if you have a good doc. It is well worth it.
I was prescribed mestinon, prednisone and cellcept.
It will get better.

I was on prednisone (20 down to 5mg now) Imuran and mestinon for two years. I could work at my desk job , but that's about all I could do. I had to rest in the evenings and week ends to have the strength to work again. I recently had IVIG ( which I greatly feared) and wish that I had asked about it sooner. Before IVIG I could only sit up 2 hours a day. No walking, working or extra activity. Now, I can do so much more, I feel like I have my life back. I still have limitations, but I am thrilled to be able to do some things that I couldn't before. I still have to take mestinon and sometimes, I overdo. Good luck to you!

I'm just back from my MG doc (2 hours away). I "don't have MG and we don't know why the Mestinon works". So be prepared for any response. This was the response I never practiced for!

I would ask the doctor how your local family doc/neuro would communicate with him, about regular treatments or in case of a crisis. I would also ask about what he suggests if you have to have heart surgery - special precautions, drugs to avoid, etc.

I would ask him for his warning signs that you are not being successfully treated so that you can head to the ER or a local doc. MG is not something that can wait for a 3 hr drive somewhere. I recently purchased a home oxygen meter so that I could check my levels when not feeling well. It also does pulse rate and mine was 145 when walking from parking lot to see the doctor - a little more than just nerves, I think, as my feet were heavy and dragging too.

Good luck Tuesday. Maybe you can write a list of things you can no longer do. I had a "what I couldn't do and how Mestinon helped me get back to a normal life" list. It was quite dramatic! I've just finished a weekend cross-country skiing, skating and swimming with my kids - all things I couldn't do before. I had problems making a bed, pinning laundry on a line or stirring soup before. Doctors seem to understand when they hear real-life disabilities.

Flutebell (fingers crossed it goes well for you next week!)

well here it is 2:45 in the morning, I haven't slept a wink when I decided I had best check out what everyone had to say and wow am I ever glad I did, such great advice from all of you...Thank you so very much!!! I have my table here in front of me and will be frantically writing down all your wonderful advice to present to my neurologist.

Ann you are right that the drive is worth 20 minutes of a great doctors knowledge. Where I am going to, is Oregon Health Science University Hospital neurology clinic and these doctors are all over you each wanting to find the best for your situation. They are all outstanding, which unfortunately is more than my local neurologist was willing to do. But that isn't what is important now, what is important is that we know for sure I have MG and that we need a treatment plan in place.

Flutebell, thank you so much for your great advice, and I am for sure going to be doing most of what you suggested...again thank you all for your response, it has made me have a more positive outlook on my visit and has armed me with knowledge from my wonderful support group that has been where I am and is willing to share.

Thank you!

Tera

I have found having a doc far away isn't a problem. I go to the U of M hospital. They are sososo helpful. They are wonderful and I go now every 6 months and he talks with me for 45 minutes.

I am bringing updates on my visit to Portland Neurology clinic, they said I have a mild case of MG, started me on 60 mg of the generic MESTINON to be used up to 4 times in a day, but they did find nodules in the cavity where the Thymus was and though it could be just the residual of what once was my Thymus they are rechecking that in a few months anyway.
My cardiology visit was great as he said the calibrations that were done in the ER have helped with the A-Fib and heart dropping every other beat, BUT wanted to know what was done since my TSH was so far out of whack. He wanted to know why my cardiologist was having to deal with my thyroid when someone else should have seen this and moved to increase my medication to 2.5 ...my TSH was at 15.200 and he so no wonder I felt like poop in a can.
So for now he is keeping an eye on my thyroid and heart at the same time and wants to keep in close contact with the Neuro about my MG and the medication prescribed. Then he put me on something for anxiety since he said I was practically through the roof and just needed to calm down.
So with the mestinon being given to me to take as needed up to so many times a day and the anxiety meds were issued the same way, I wasn't sure what actually warranted me using them, after all to me I had been feeling this way so long it all felt pretty normal.
I gave in and started using them both on Saturday and thought oh my gosh, I get it, this is how I am suppose to feel...I wasn't over the top with anxiety and body was feeling more like its old self...not perfect but I didn't have the weak muscles as bad though I did note one thing that was worse and it was my vision, I had to read something on white paper and saw the paper without any of the words on it, scared me breathless. That is it so far, and will keep you posted on the good, bad and the ugly truth of how MG makes me feel and what is being done to fix it.
God Bless!

Glad to hear things went well. MG is drastically affected by hypothyroid issues for some of us, the heart too, in my case. When my TSH gets to 4.5 I feel like an elephant is sitting on my chest. I feel better in 48 hours after a dose increase, even though docs want repeat TSH done in 6 weeks. I have horrible palpitations when my thyroxine dose is too low; most people have them when it is too high!

Some of the anxiety issues can be related to not feeling well or not breathing well. You may find that with the mestinon and increased thyroxine on board you don't even need the anti-anxiety med.
Cheers
Flutebell

U are so upbeat, I just love that about you, Flutebell. I do feel better, just wasn't sure what better was suppose to feel like, but it is good and I now want more of it.
Time and time again I have been told that it just doesn't happen overnight, but I think in this case it has happened in just about that length of time.
Tera from Oregon