Heat and Limbo Land

[J-er]

Hi guys,
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. 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?
Thanks, J!

[hunterd]

I am not in limbo, but I will answer my experience anyway. With the heat I get weak allover and I will get to a point that I cannot go anymore. It normally takes me a few hours before I feel any better. Some things that I have found that help are soaking a t shirt and putting it in the freezer. Get a rain coat with many pockets and put freezer packs in them. I wish you luck.

[SNOOPY]

Hi J-er,

Heat can cause an increase of MS symptoms and are usually temporary (pseudo-exacerbation), once the person cools down the symptoms should go back to what is normal for that person.

In my case, 4 of 5 of my exacerbations were triggered by heat. So, what would start out as a possible pseudo-exacerbation turned into a full blown true exacerbation.

Nowadays, heat makes moving difficult. My legs feel like they weigh a ton and I can barely stay up right, fatigue sets in, I feel like I can't breath and my legs hurt. I have to be careful because I no longer perspire so overheating becomes more serious.

[J-er]

Hi J-er,

Heat can cause an increase of MS symptoms and are usually temporary (pseudo-exacerbation), once the person cools down the symptoms should go back to what is normal for that person.

In my case, 4 of 5 of my exacerbations were triggered by heat. So, what would start out as a possible pseudo-exacerbation turned into a full blown true exacerbation.

Nowadays, heat makes moving difficult. My legs feel like they weigh a ton and I can barely stay up right, fatigue sets in, I feel like I can't breath and my legs hurt. I have to be careful because I no longer perspire so overheating becomes more serious.

Thanks for the reply Snoopy and hunter! appreciate it! Basically I have kind of figured that considering I am not even diagnosed yet, just gonna go out and see what happens. Try to stay cool as best I can. I gotta stop being so nervous and just go and do some stuff. I have noticed I am shying away from doing things while I don't even have a diagnosis yet. Cant live like that. Thanks again!

[allHailye2]

I sure don't miss the days when my vision would get blurry if I got hot! Spent about a year dealing with that.

[J-er]

thanks for the replies everybody! I appreciate them!

[J-er]

Hi guys, well off to Florida tomorrow! 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!

[x2theone2x]

I would just push for the lumbar puncturel; i had one when I had some viral issue and was misdiagnosed with viral meningitis prior to the spinal tap, it wasn't bad at all to be honest and I can't understand the complaints about it.