[ErinBear]

Dear Rosepointe,

Hello and welcome to the forum! AnnieB3 always has such good advice. I'd add a couple more, if it's okay.

Since you live in Florida, it's a good idea to take good care of yourself in the heat. Probably you already do! Scheduling activities or chores for the early part of the day when possible, before it gets hot, can really help. Hopefully you have air conditioning, but I use gel freezer packs (normally for sore muscles) to help cool myself further if I feel hot in summer. They really help.

They say stress can make MG symptoms worse. Everyone has their own experience, but I believe it can be true. I try to make quiet, peaceful time every day, and that helps me. I also make sure I do at least one thing every day I enjoy. It does not have to be fancy or expensive. Maybe I take time to watch a beautiful sunset out the window. Maybe I listen to some special music I enjoy, or a favorite show on television. Maybe I have a nice visit with a friend, in person or by telephone. Maybe I go outside on my balcony and enjoy the flowers which are blooming in the morning sun! Maybe I enjoy some knitting or crocheting. But I think taking good care of ourselves in ways like this can help us get through our MG journey.

Sending best wishes to you from California,
Erin

[rosepointe]

Originally Posted by ErinBear

Dear Rosepointe,

Hello and welcome to the forum! AnnieB3 always has such good advice. I'd add a couple more, if it's okay.

Since you live in Florida, it's a good idea to take good care of yourself in the heat. Probably you already do! Scheduling activities or chores for the early part of the day when possible, before it gets hot, can really help. Hopefully you have air conditioning, but I use gel freezer packs (normally for sore muscles) to help cool myself further if I feel hot in summer. They really help.

They say stress can make MG symptoms worse. Everyone has their own experience, but I believe it can be true. I try to make quiet, peaceful time every day, and that helps me. I also make sure I do at least one thing every day I enjoy. It does not have to be fancy or expensive. Maybe I take time to watch a beautiful sunset out the window. Maybe I listen to some special music I enjoy, or a favorite show on television. Maybe I have a nice visit with a friend, in person or by telephone. Maybe I go outside on my balcony and enjoy the flowers which are blooming in the morning sun! Maybe I enjoy some knitting or crocheting. But I think taking good care of ourselves in ways like this can help us get through our MG journey.

Sending best wishes to you from California,
Erin

Thank you Erin. Stress and mine is usually about medical issues (mine and my extended family) makes my speech horrible. I just got back from my gastro Dr and I am realizing that (which I knew as my niece has horrible RA since 23) autoimmune's effect everything in ones life. My pace is good and with support my neurosis and anxiety about MG will get better. I am glad I joined this thread.
Thank You
Sue

[Jeff_MG]

Howdy,

As one who has experienced the benefits of a thymectomy, I encourage you to check it out. I had the regular (chest cracking) procedure, it took about 55 minutes. Obamacare was good for something after all.

My current status: generally symptom free. I went from 3 x 60 mg of mestinon daily (pre surgery), now about 3 years later, I am almost in complete remission. I take mestinon as needed, some days none other days about 30mg.

Good luck.

[rosepointe]

Originally Posted by Jeff_MG

Howdy,

As one who has experienced the benefits of a thymectomy, I encourage you to check it out. I had the regular (chest cracking) procedure, it took about 55 minutes. Obamacare was good for something after all.

My current status: generally symptom free. I went from 3 x 60 mg of mestinon daily (pre surgery), now about 3 years later, I am almost in complete remission. I take mestinon as needed, some days none other days about 30mg.

Good luck.

Thank you Jeff. Had MRI's last year before being diagnosed and they were all clear. Even the wonderful Thymectomy one. I did however test positive for the antibody which many do not.

Thanks for the suggestion.
Sue