Well, everyone, I finally have a positive DX of MG. The doc is starting me on mestinon tomorrow; 1/2 twice a day until I'm up to 1/2 4 times a day if needed. Will only add prednisone if the mestinon does not work well enough.

My parents went with me today so they could ask questions and hear what he had to say. They were both rather subdued on the way home as was I although I anticipated this from the beginning of this whole journey back in May.

Knew the stress of the day would lead to a migraine and it did. I took my migraine meds and now I feel rather tired and drifty (if you know what I mean). Kind of detached but relieved at the same time.

Many thanks to everyone who has so patiently answered questions and encouraged me over the last months. I really appreciate it. I look forward to continuing our association (although I'm sure we would all rather not have to under the circumstances) and to continue to learn from all of you.

Many thanks,
Shannon

Hi Shannon
I can tell from some of your previous posts that this has been quite a journey for you. I know you have mixed emotions right now with the dx but now you can move on and start on the mestinon. I hope that you can tolerate it. I know that when I started on a 1/2 tablet X 3 a day......it was a huge difference to me. To be honest, within 24 hours i could feel relief from my symptoms. I really do hope this works well for you too and you continue to have relief from your symptoms.

Take Care
JJ

Hi Shannon! Congrats on the dx!

I know when I was first dx'ed I was sooooo relieved - as there were certain family members who claimed I was just being lazy or wanted attention.......then I was in shock and then ANGER - big time! I know this site has helped me so much in my dark times....there has ALWAYS been someone there for ME!

In my very humble opinion Mestinon is GREAT stuff! The first time I tried it I was finally able to chew and swallow ice - I was so happy that I actually CRIED!

I do have acute MG so Mestinon wasn't enough for me, but I bet it will make YOU feel like your old self!

I am HAPPY you have your dx b/c now you can get to feeling your old self again!

Big hugs!
Erin

Well, Shannon, I can't say that I'm surprised. Sorry you have it but glad you know. Give it some time to sink in. Pamper yourself. Talk to people. It's going to take a while to know what it means to your life. It's different for everyone.

Annie

congratulations on getting a diagnosis. Sorry you had a migraine, they are awful things.

I really hope that you notice a big difference with the mestinon.

What a journey!

Love
Rach

Hey Shannon,

I'm so glad you finally have a diagnoses so you can start feeling better. Mestinon helped me from the very first dose. If you have any stomach problems, it helps to take it with food and a full glass of water. Good luck and let us know how you're doing. Take care.

Hugs,
Pat

Hi Shannon,
I am so glad you got your DX! I know you are still trying to process everything but hopefully you will results right away from the mestinon!!! I have ever been so ready to start anything! I would love to hear how it works for you when you get a minute to update everyone. Like Annie said pamper yourself and rest. You will be in my thoughts.

I can't remember if you tested pos. in the antibody test? I know we emailed a few weeks ago since we both use Dr. Whitaker. Today is the dreaded EMG tests for me. Can't wait to get those behind me. My antibody test came back pos. I am a little concerned though after reading your posts about the process before you were given Mestinon. I noticed you had EMG tests on the 16th and saw Dr. Whitaker yesterday and got your meds. I was sooo hoping I would get Mestinon today but am now having doubts. I don't see Dr. Whitaker again until Nov. 1. I am going to be so disappointed if I have to wait another month!!! I plan to ask for some definite answers today and may have a melt down if I don't!!!
Take care of yourself,
Kendra

Hey Shannon,

A positive DX can set you back on your heels, but it can also be encouraging to know exactly what you are fighting. I received a DX just 5 months ago after fighting this for about 4 years. I take 1/2 every 4 hours around the clock, and I hope the mestinon works as well for you as it did for me. I could tell a big difference just the next day, and it brings a big difference to my everyday life.

May God bless you in your endeavor, and don't let it get you down. Knowing what the enemy is, is half the battle.

Steve

I always say that if you have to fight a dragon, better do it with your eyes wide open and not blind-folded!

this is also true for fighting "wind-mills".

and when you have to fight both wind-mills and dragons, you better be fully alert.

or else...



alice