Well going on 18 months of limbo land. Clear brain, brain stem and c-spine MRI. My neuro is in a wait and see approach, while “could be” MS, nothing points to it yet. And she has said until something shows on an MRI she will not push for a lp. Anyways, here is my question. The way I feel, it sort of seems like PPMS, since while somethings have come and gone, some things have also stuck around all 18 months. Well, next month myself and the family are going to Florida for vacation. A couple days we have planned to go to the parks. As of right now, the only issue I have with extreme heat is my feet get “prickly” on the bottoms (and of course i sweat !). With extreme heat, does your MS get worse, as in other symptoms, and things progress, or is it just a momentary thing, and then you go back to where you were with your symptoms, once you cool down?
There’s no evidence at all that getting hot accelerates progression, if that’s what you’re asking.
Otherwise MSers in hot countries would all be more disabled sooner - but there’s no evidence their disease course is more aggressive than anyone else’s, anywhere in the world.
As there’s so far no concrete evidence you have MS at all, I think you should just go away and try to have a nice holiday, and stop convincing yourself it’s PPMS, and worrying that two weeks away has any influence on disease course whatsoever. It doesn’t.
Many people with MS experience worse symptoms in heat. I wouldn’t describe it as exactly “momentary”, as heat itself is rarely momentary - it lasts as long as the heat does, which could be anything from a few minutes (hot shower), to a few days or weeks (heatwave, foreign holiday). But it has nothing to do with progression.
Thanks Tina! I appreciate the feedback!
To help keep prickly feet to a minimum in warmer climates, drink plenty of cold drinks (with ice), frequent air-conditioned premises, if you’re driving see if the vehicle you are getting has air-conditioning as well, cold-damp cloth on the back of the neck and/or soaking feet in a few inches of cold water in the bath tub when you get back to your hotel.
Have a great time on vacation.
Thanks for the replies! Greatly appreciated! Basically I just am gonna go and see what happens! I dont even have a diagnosis yet and lately I have been shying away from doing things. Gotta at least try it out! Sometimes my nerves get the best of me. Thanks again.
Well all I am off to Florida tomorrow! WIll let you know how things work out! Guess I gotta stop worrying and just get out and do stuff! With the mid 90’s! I will let you know how I make out! And am going to try to stay off the forums while I am there!
Hi J’er, I hope you are well? I was just wondering how you are doing now? Did you ever find out what was happening? Cheers, Gary
Hey J’er we have a lot of the same symptoms I am in limbo as well. How are you doing did you get a dx?
I don’t think you’ve noticed that this is an old thread, J’er hasn’t posted for a long time. I suspect probably not MS.
If you have questions, probably better to start a new thread.
Thank you sss…