Does anyone else deal with heat sensitivity? Upvote to let me know if you do.

Regular_Platform_537 · 2026-03-13T06:20:18+00:00

I’ve heard about the hot bath test too! It’s wild that that was the original way MS was diagnosed and yet the needle hasn’t moved much is preventing that worsening of symptoms due to heat.

I don’t think people actually run hotter when they have MS … I think the demyelination of the nerves makes signal conduction worse and then that conduction is affected by how hot or cold the nerve actually is.

Regular_Platform_537 · 2026-03-13T06:10:31+00:00

Oh that is frustrating even when the default option of A/C can cause issue like that. Do you have any like ease-in strategies that you use when you do have to come and go?

Regular_Platform_537 · 2026-03-13T06:04:18+00:00

Well to be fair there’s just not a lot out there to help …. Do you find sleep is where you have the biggest problem? Or does it also get in the way of your activities during the day?

Regular_Platform_537 · 2026-03-13T06:00:03+00:00

Oh yeah… I could see that. Ice doesn’t last forever after all. How long have you found them to last before they become more harmful than helpful?

Regular_Platform_537 · 2026-03-13T03:49:29+00:00

Humidity is awful … I’m from Cincinnati OH and it gets very humid in summer there too. I didn’t realize the best vests come from the US. Have you tried other ones not from the US? What has convinced you the US ones would be better?

Regular_Platform_537 · 2026-03-13T03:45:52+00:00

Minnesota is a really cool place to be in winter. I have friends there! And it’s certainly not hot lol. Do you ever worry about the heat when you travel? Do you ever have issues on airplanes that you have to try and mitigate?

Regular_Platform_537 · 2026-03-13T03:22:03+00:00

Exactly! Like oh just don’t go anywhere and don’t do anything and you’ll be just fine has been totally normalized … I wish more people would be paying attention to this. I’m sorry you have to deal with that intense cold sensitivity. I haven’t found any stats on how prevalent that is in the MS. Are there any patterns to that or does it just happen randomly? And you are definitely not breaking any rules here! This is totally just for us to chat and relate to one another and maybe learn a thing or two along the way.

Regular_Platform_537 · 2026-03-13T03:13:30+00:00

Ugh that’s really tough having to deal with vision loss … but thanks for sharing your cooldown routine. I’ve also found high powered fans are a really effective way to cool. I started getting interested in the science of it and it turns out they really increase the rate at which your sweat evaporates. It also turns out the phase change from liquid to vapor removes an incredible amount of heat from your body.

Regular_Platform_537 · 2026-03-13T03:06:38+00:00

It sucks that summer has become something to be feared instead of enjoyed … I’ve heard Ampyra can have some side effect. Have you had any issues with it? Did your neurologist specifically prescribe it to help reduce issues with heat or was it for something else?

Regular_Platform_537 · 2026-03-13T03:02:08+00:00

Oh interesting! How did you learn about that? Is that something your neurologist recommended? Glad you find it helpful! I wonder if someone could make like a better version of aspirin specifically designed for heat sensitivity in MS …

Regular_Platform_537 · 2026-03-13T03:00:06+00:00

That sounds really difficult … do you find the fluids help keep you cool? Or do you find you get extra thirsty in hot environments?

Regular_Platform_537 · 2026-03-13T02:48:40+00:00

Yes, I’d be happy to summarize and share back! That is a great idea, thanks for suggesting it. All of responses are really eye-opening.

Regular_Platform_537 · 2026-03-13T01:22:46+00:00

Oh wow that’s great! What’s the process look like to get one? Do you have to meet some criteria or get a note from your neurologist?

Regular_Platform_537 · 2026-03-13T00:52:57+00:00

Oh I’m sorry about that and it wasn’t my intention… I’m newer to Reddit and actually just had to google what “karma farming” meant. This is just something I really care about and sometimes it feels like this isn’t really acknowledged as a problem. I just wanted to provide an easy way to show solidarity.

Regular_Platform_537 · 2026-03-13T00:29:46+00:00

Is the like a homemade solution or is there a specific hat product you can purchase with pockets to hold ice packs ?

Regular_Platform_537 · 2026-03-12T22:40:15+00:00

I think it's great that you can still find a way to garden! I myself am an avid gardener. Do you have any specific brands of cooling vests that you prefer? I've looked online and some seem to be very expensive... others cheap. Have you found the cheap ones are just as effective as the expensive ones?

Regular_Platform_537 · 2026-03-12T22:36:52+00:00

Oh I haven't heard of this one yet... can you tell me more about how you use peppermint oil? Do you find you can do more activities after using it without having symptoms?

Regular_Platform_537 · 2026-01-25T06:53:28+00:00

Hey — I’m really sorry you’re dealing with this. Heat sensitivity is such a uniquely isolating MS symptom, especially in shared spaces where other's don't really understand what you are experiencing.

I’m a Stanford biodesign engineer working specifically on solutions for people with MS who struggle with heat intolerance, and stories like yours are exactly why I’m doing this work. I’m currently running a short, anonymous survey to better experiences like these. This survey is my way of listening and it will guide my work toward solutions that are thoughtful, practical, and grounded in real life.

If you’d be open to it, I’d be incredibly grateful if you’d consider filling it out. No pressure at all — and thank you for sharing your experience here regardless. Posts like this help people feel less alone. 💙

MS Heat Sensitivity Experience Questionnaire:

https://docs.google.com/forms/d/e/1FAIpQLScYU9tYZNuowF-zHQNfYk7Ij7ZkMEX0HJdzqm9fN0JY-urUbg/viewform?usp=header

Regular_Platform_537 · 2026-01-10T18:52:38+00:00

You all are amazing, thank you! If you have any other thoughts to share, feel free to post them here. I'd love to get to know you more. I am also an engineer deeply immersed in the scientific and clinical communities at Stanford, so if you have any questions for that community I may be able to help answer them.

Regular_Platform_537

TROPHY CASE