[Christy]

Third time jumping in:

This forum is fantastic. You are all a joy and encouragement. I wish I had more wisdom to interact in the conversations. I usually log in, read at midnight after work. Having absorbed so much information from ‘listing’ to each of your stories, I am now prepared to go to my first yearly appointment and ask for an anti depressive.
More of my MG journey ;
Out of curiosity, I went to a local MG support group meeting in November and was delighted to see 20 - 25 people who visibly gave the impression of being healthy. I could not tell who had MG and who did not. Essentially, I liked that. I chatted with a Nurse (who accompanied the featured speaker) she was enthusiastic about the MD/MG clinic at Emory University.

I listened to the speaker as he explained what was going on at clinic and encouraged us to get involved. (Note: I listened to this doctor on Neurology Podcast and was optimistic with his position of treating MG). He explained about the drugs and treatments that may modify the immune system and how ongoing drug management might influence MG. Apparently Emory is involved in clinical studies and data collections for MG in relationship with MD foundation.

After the presentation, I personally discussed my MG and goofy immune system with the lecturer Doctor. I explained to him that I was only taking Mestinon. He replied that if and most likely, when, I end up in crises I will have wished I had been on immunosuppressant drugs. He again encouraged joining clinic. I was visualizing tube down throat and the whole MG crises thing (you guys have painted a vivid precise scary picture).The moderator of the event overheard my conversation with the doctor and kindly and respectfully makes clear to me that she had been on ONLY Mestinon for 25 years and doing just fine (she looked exceptional well).

I was anxious. I was on overload. I did not say good-bye, made a bad-mannered, quick and hopefully unobserved exit.

A few days later and less emotional, yet still perplexed by potential new options, I telephone the nurse at neurologist office and explained “MG clinic” and my dilemma. She listens carefully as always, tells me she will consult with Dr. and call back.

Quick call back slightly encourages clinic with big overtones of caution using other perhaps unneeded strong drugs (Note: From the on set, I let the doctor know that I was not much on medication). Therefore, I gave myself a wait and see approach.

Now I am waiting, working about 60 + hours a week over 6 days. Pacing my Mestinon and me carefully over 6 days and crashing on the seventh. My home is a mess; social life has disappeared. Quality of life is zilch. Enter depression - or my ADD has overtaken ability to concentrate on anything other then coping daily. Maybe both, I can usually get a handle on the ADD stuff and I can usually handle bumps on the emotional stuff but I cannot seem to do either with the MG interference.

Interestingly over the past 5 days, almost all MG symptoms have disappeared. No Mestinon for 3 days. I went for a (reminiscent of pre MG) energetic over a mile walk Wednesday night, I was euphoric. I know MG is incurable, I know it can go into remission, I am caustically optimistic. Nuro appointment this Tuesday .

As I read this forum each day and learn your stories and struggles, I am moved to tears.
Blessings to all,
Christy

Note on messy house:
After sweeping patio with the leaf blower, I had the idea to dust the baseboards inside the house with the blower. Do not try it; it is not a good idea.
Note 2, I liked watching the Utube interesting MG videos.