MGer from Kansas
 

HI everyone! I love reading all your posts and seeing all the compassion and encouragement and infos. So very helpful. When my neuro of 3 years finally stated last Monday that I have MG, I burst out laughing, "What do you know! You and I are finally on the same page!!!" Thank God he laughed. So it was off for the chest ct scan. Now we wait results and options as surgery and type or not at all. I hate waiting! Will do nerve/muscle exam this Tues. Am so relieved as neuro finally started me on the mestinon and I am alive again! Even if its only for an hour every 3 hours! I'm up to 60mg every 3-4 hours depending on activity or body response. My neuro allows me to adjust meds as needed. Which only makes sense as some days I am homebound with limited activity and on other days more active thereby needing a higher dose to keep muscles lubricated. Mestinon is a huge sigh of relief after 9 years of waiting for a diagnosis. Actually it was the opthamologist who gave the diagnosis of ocular MG and now all docs are scrambling off in that direction. Because of my DID diagnosis, they have been reluctant to do any invasive proceedures in the past. Even tho I have over 30 demylineating brain lesions, a brain tumor(sm), frontal lobe seizures that affect the autonomic brain system(can stop breathing and heart in a snap of the finger). My days are numbered so I just keep them happy. I tell everyone that Im on strict doctor's orders ...I can only do HAPPY! lol I have learned alot on how to cope, relax, and enjoy the absurdities of this disorder-miserable as it can be on many days. The key is LISTEN to your body.

Welcome to NT

You are ahead of the game, my friend. We need you here. :grouphug:

Here's what I do for my mg ocular problems. When the blurred and double vision ( must be vertical-not a horizontal double vivion to be MG) it is simply a warning sign that of fatigue. So by "listening" to my body - I stop what I am doing, go and lay down and put ice chips in a cloth upon my eyes. Then, rest for about 15-30 mins and you will feel remarkably better. Ice packs on arms and legs is also very restorative. Its not a long term "fix" - but comforts the weakened muscles, relaxing and easing the achy pain. Hope this helps someone. Its a beautiful day-breathe it in!

Thanks for being here, Tresa

I needed that advice :)

Oh, I'm so glad I had something to help you! This is fun to find others who KNOW what you are talking about! I luv kentucky-its so beautiful there. Luv kansas as it has turquoise skies with pink clouds-incredibly beautiful-at least when you move from Texas and see it for the 1st time. I used to be a very independent woman-leader of the pack type- so you can imagine how my friends just love to tease me now over my helplessness. At first I tried constantly to hide it from them, but I am so much happier and more less stressed now that I have finally told them. The laughter has made this little monster a more cuddly buddy we all just pamper and tolerate with acceptance and ease. Our attitude is-time for baby to take a nap! LOL.

Hi Tresa:

When you say DID, are you referring to Dissociative Identify Disorder?

I read your diagnoses and my goodness, the fact that you still have a sense of humor that is intact, well it truly humbles me.

Just wanted to say hi, welcome and keep posting.

We need you

Melody