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core temp

My name is Mike
After arm weakness and other mild symptoms that are typical with progressive types of MS, a lumbar puncture finally confirmed MS.
This was 2005 and there very few treatment options, I watched people I knew and close friends try every medicine available only to get worse and perish. I chose to not use therapy and try alternative methods, nothing really worked but trying to stay active helped.
2015 I decided to try Tysabri, I had to travel 3hrs every 28 days for infusions and I don't think it was helping anyway so when Ocrevus was approved I went with that. After two treatments it was clear my body was not happy, walking got worse along with other symptoms.
In 2019 I had to stop working because heat intolerance caused a few incidents at work to prompt safety concerns. 2019-20 I completed treatment with Mavenclad with no issues.
During the global pandemic I was able to do telehealth with a MS specialist, this was what I needed, I got started with correct PT/OT, no new lesions or disease activity, I was completely healthy, but!
The last few years, last 2 especially, after doing well with home PT, I would have seizures and have to go to the ER. No one had a clue why this was happening. Back to IPR to get strong enough to go home again only to repeat.. Jan 13th same thing, this time the hospital neurologist decided to further research a possible cause, he had never seen anything like this. Finally after using a biomarker blood test he was able to confirm a rare condition..
I have a hard time believing it's that rare! Maybe it's the answer more MSers are looking for??
So now I need to figure out how to continuously monitor core temp, I'm looking at a device from . any thoughts?
Since the pandemic is over, the specialists I was using refuses to communicate with me on this, which really sucks. So I'm on my own and would appreciate any help. I will be leaving IPR soo to go home and resume outpatient PT/OT, now I know what watch for,, just not sure how. Thanks

  1. thank you for taking the time to share your story. I'm of course sorry to hear that you've had such a long, and trying road with MS. It sounds like you've been resilient over the years of trying different DMTs as well as lifestyle practices like staying active. That takes a lot of strength - physically, mentally and emotionally. So thank you for being that example of perseverance.

    It sounds like you were fortunate to have a very caring ER doctor who was able to do additional research and find some better answers for you. Thanks for sharing that with us. I hope that you're able to find more details on the managing the core temp. I'm sure others will join this conversation with their firsthand experience. I just wanted to say hello and thank you for your message.

    Please keep us posted on how you're doing, if you feel comfortable doing so.
    Alene, moderator

    1. Hello and Thank You as well!
      I've been wanting an answer for a long time, this is not the one I wanted but it does help make sense of some crazy things from even when I was young.
      I really think this should be looked at much harder. I will gladly keep posting updates if wanted and answer questions the best I can. Thanks again, Mike

      1. Thank you for sharing this. Lately I’ve found myself completely shivering and unable to get warm. When I started taking my temp, it’s been as low as 95.3. I’ve mentioned it to my primary a few times, but I can’t wait to mention it to my neurologist.

        1. , I am sorry your deal with extreme cold sensations. I am glad the information Mike shared was helpful for you and I hope your neurologist if open to discussing possible causes and treatment options for you!

          Best, Erin, Team Member.

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