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I hate the heat! Hate it!

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Old 03-28-2009, 11:52 PM #1
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Thumbs up Hi Rachary!
Yes, the heat can do awful things to you......I can go from from OK to barely there in matter of minutes - not a great thing since I live in Texas.......

From what I have heard, lots of people with MG do not always test positive for the antibodies.......they will want to do a lot of tests on you to rule it out.....You will want a great neuro that LISTENS and doesn't try and convince you that this is in your head........so many really don't LISTEN.......

If you do have a thymoma, they will want to take that sucker out............and you could go into remission! REmission!

Hang in there! It will get better!

Erin

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Hi, I'm new here and it looks like I might have MG. CT scan shows a possible thymoma and I get very tired and weak. Funny thing is that I was fine for 6 months last year and then there was a heat wave and I was awful again and have ben sick for months since. Thing is, I have tested negative to the main antibody although the neuro I am seeing is re-testing for it and is testing for the MUSK one as well. So, if that's the case, i wonder why the heat makes me worse? Anyway, they want to take my thymus gland out and I'm scared that will only maing all of this worse. I have had these symptoms - dry cough, tickly throat, light sensitive and tired eyes, intense fatige - for a year and half now and have been managing without medication although it's very inconvenient!
Any comments/thoughts gratefully accepted
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Old 04-10-2009, 06:11 PM #2
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I moved to AZ from IL like 2yrs ago, and since i've been in AZ i've experienced DV, almost everyday. I'm trying to move to Calif, where the weather is much better than IL, and AZ. I'am MuSK positive, so i think that's another reason why i can't get rid of this DV.
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Old 04-10-2009, 07:42 PM #3
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Default Wow, cold intolerant here!
Y'all seem to be heat intolerant with mg, but I am & have always been COLD intolerant...much rather be warm than even chilly, can't stand that, & my thermostat & I have an ongoing up/down game....now, if I'm outside & it's over 90*, I'd be ok 'til I exert, then all h*ck breaks loose....guess I just like it in the mid-zone....have really disliked this winter here in lower Tn, thought I was moving south to a warmer climate than NJ..... anything below 68* is uncomfortable...oh well...can't have everything, huh?

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Old 05-27-2009, 03:40 PM #4
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Thumbs up Hi Tracy!
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


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I moved to AZ from IL like 2yrs ago, and since i've been in AZ i've experienced DV, almost everyday. I'm trying to move to Calif, where the weather is much better than IL, and AZ. I'am MuSK positive, so i think that's another reason why i can't get rid of this DV.
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Old 05-27-2009, 05:27 PM #5
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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

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Originally Posted by erinhermes View Post
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
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Old 05-27-2009, 07:14 PM #6
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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
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Old 05-27-2009, 07:22 PM #7
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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
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Old 05-25-2009, 08:23 PM #8
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Hey..I also cannot stand the heat at all and swell when it's too hot...My hands especially are a target for the swelling...If I happen to be holding onto something when it's hot, the imprint of that object will be perfectly etched in my hand...lol...I find that drinking cold liquids and washing my face with ice cold water helps...I even wash the inside of my nostrils with cold water to ensure that I am 'well-iced.' lol

My symptoms are mainly bulbar and I have a thymoma (just to give you a bit of background info. since I am new)

Nicky
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