Hi Tracy,

Welcome to the group! You are going to like it here. I'm pretty new too and I just love it! I hate the heat too.

Take care,
Pat

don't know where i read it but you can go on-line for "cooling bandana" there are neck,or headband or vest things which are activated by h2o someone told me to dry as much as possible in between for odor issues but febreeze also works well. i ordered 10 of them -neck and headband for myself and other family members who have to out in heat occ for work.i sure hope they work,i sweat like a *** even in cooler weather!!

Hello and welcome to neurotalk! You are going to love it here! When I first started (a year ago) I had no one to share my fears/frustration with....this site has been a true life saver for me!

What is DV? How do you handle the HEAT in AZ? You are MuSK positive? How is that different from generalized MG? What meds are you on? Do you have a support group in AZ? I'm not trying to be nosy, I'm still a "newbie" with MG (dx'ed last year on March 6th - thymus removed April 22nd).....

I would love to hear from you when you have some time!

Erin

Hello there! Much better day today - saw my dr and I'm going down to 20 mgs soon - hopefully that will help with the heat issue!

I never thought of the febreeze but it sounds like a GREAT idea! I'm going to try that - and get one of those cooling bandanas/vests to help out on the really hot days - which we have a lot of here in Texas! LOL

I was able to go to the salon and get my nails filled and my stache' waxed - along with my eyebrows so I feel prettier - silly I know, but I'm not going to let MG take away my dignity! I REFUSE!

How are YOU feeling today? Are you stronger?

Can't wait to hear from you!
Erin

Hi Erin,

Thanks a bunch, DV means double vision, and i don't handle the heat good at all. I've notice since i moved here my double vision has gotten worse. I'm on prednisone 10mg a day, and Imuran 150mg a day. I was just diagnosed it MuSK just last year, so i don't know much about it, except for that having a thymectomy wasn't needed, and that i need that little extra umph!! Meds don't seem to really help as much as they would someone else. They do have a support group in AZ, but i dont think it's really that big, and they don't meet up as much like the IL chapter. I've had MG for 16 years now.

Tracy

Hi Tracy, My son lives in AZ ! Wicked hot there ! LOL... I am in FL, the heat & humidity is the pits, I get DV, & millions of floaters. I have optic neuritis also that is painful when it flares.
Everyone in here is great, so much information, & support !
Mary

Hi Mary,

I'm from Chicago, and i'll take the humidity over a 105 or 115 every day, i've never sweated in my life til i moved here.

Tracy