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Traveling with MS: My new emergency kit

The impact of heat

I am currently fit and healthy, and about to spend two weeks in the United States meeting my partner’s family. It will be a time to remember.

But MS has the potential to get in the way during my first visits to Phoenix, Arizona and St Louis, Missouri.

Many people with MS have a degree of heat sensitivity, and experience suggests that I am particularly sensitive to changes in temperature. Lets face it, I’m the girl who almost passed out in a hot bath in Berlin and on a crowded tram in Melbourne because my system shuts down when I heat up too quickly.

As of right now, Phoenix is 43°C (that is 110°F). That is a good 8°C more than I have let myself go anywhere since the tram incident.

With MS, anything could happen. And so I am taking what precautions I can.

My emergency guide to travelling with MS

Nothing in my emergency kit is going to stop me from having a relapse or an exacerbation, particularly if I overheat. But if my healths takes a dive, these things might help.

My little red kit includes:

  1. My disease modifying drug of choice, Gilenya. I have enough for the duration, as well as a few stashed away in different bags in the event that I lose some. Given the heart rate complications of the drug, Gilenya is not something that I can miss.
  2. A letter from my neurologist. Gilenya costs around $62,500USD per annum in the United States, and it is not something to lightly carry through customs (although it is significantly less fraught than travelling with injectable MS therapies). This letter is also going to help if I end up in the hospital (for MS, or due to some other random event).
  3. Travel insurance for MS. For the first time, my annual insurance now includes a premium for MS related issues. God knows if this will actually be effective, but I’d be an idiot not to have it.
  4. My Medic Alert bracelet. I don’t wear this normally, it is for emergency use only. But if I were to become sick or disoriented (like that time in an airport I missed my flight), I can wave this around (or more likely, my partner can wave it around as I may not be moving my arm at that point) to receive help.
  5. Just-in-case Prednisone. If I have a relapse, the thought of seeing yet another neurologist when in a distressed state is not appealing. Depending on what my symptoms are and whether I am mobile, I will just get on a plane and head back to Melbourne to see my neurologist – an option far cheaper than the medical system in the United States. But in the meantime, or in the event that I do see a neurologist and don’t like his treatment advice (as happened in Sydney), I can start the Prednisone myself.
  6. Relevant contact details. I have the business cards of my neurologist and MS nurse, and they are also loaded into my phone and that of my partner.
  7. Additional incidental drugs. For those one off occurrences and to address a variety random MS symptoms.
  8. Hand sanitisers and wound disinfectant. I – and just about everyone who travels – always carry hand sanitisers anyway,  but now they take on a particular importance. My immune system is compromised due to the Gilenya, and any inflammation or sickness can trigger an exacerbation of my symptoms.
  9. Vitamins. Strictly speaking, these aren’t for an emergency. But I take them every day, they are part of my health routine, and they are coming with me.

And of course, there is good old common sense. I will not go into direct sunlight. I will stay hydrated. I will not attempt to climb Camelback Mountain in Phoenix (and I will regret every moment not doing so). I will conserve my energy.

And I will damn well enjoy myself.

Post script: I do not advocate anyone with MS randomly treating themselves with Prednisone if they feel unwell. My neurologist gave me the script to use in case of a genuine emergency where on the spot and/or effective treatment was not available. Hopefully, I never use it and I end up carrying the script around until it is out of date.

15 thoughts on “Traveling with MS: My new emergency kit

  1. Oh! how hard is it to organise yourself when going away! I have been doing it for 42years! You are so right in everything you say, even to the insurance you must have just in case! And the extra you are charged because you have MS. I had an article published in the MS Intouch newsletter last September, would love to forward it to you but an unsure how to do it.
    Really love to read you blogs! Thanks Maureen Wilkins

  2. Mt article is not about travel with Ms, it’s basically about what I have found, through a wonderful young man, a trainer at my local gym, who did a special program for me( as he was working a lot with people with MS as has is an exercise physiologist). It has totally changed my life, as not only is the exercise wonderful but the interaction with the lovely people at the gym has been just what I needed.
    Will post the article to you when I get home from gym.

  3. ahhh yes! i just had my first experience with heat and MS! it only gets to around 18-21C where i live (60-75F), but 2 hours south of us is wine country, which we had to drive through to get my MRIs. i wanted to take pictures on the way home yesterday and it was 42C (107F)! after two days of travel and hotels, terrible MRI experiences, and then out in the sun and heat like a fool, taking photos, i’m so exhausted today! lesson learned. :
    i hope you have safe and fun travels and no adverse experiences with the heat and your MS! excellent travel kit… i’m taking notes since it’s all still so new to me! i never thought about a letter from the neurologist (with what kind of info?? what does the letter say?) or prednisone.

    1. Many thanks, MS Girl. Three days in +42C heat and I am doing well! I think possibly it is because it is dry heat: there is very little humidity.
      My letter (on the hospital letterhead) simply says that I have MS and that I take Gilenya. I would like to update it and add that I have previously taken intravenous steroids during a relapse and had no negative reaction.
      The oral prednisone is an alternative (and portable) treatment for a relapse. I have never taken it, but I will if I have a relapse (more than 24s of continuous symptoms) and am not near a doctor when travelling.

  4. I’m enjoying your blog and your tips. I’m getting a travel kit together to go to Papua New Guinea for six months (I’m a tad nervous about the humidity, expense of going to the doctor and also all the infections that go around). I want to be super prepared. Have you ever worn a cooling vest?!

    1. Thank you Sabine!
      I have never been to PNG (although I would love to). That is tropical, wet heat, which I haven’t been in since my diagnosis. I’m currently in +42C dry heat, and finding it ok (as in, I’m feeling no worse than everyone else in this heat!).
      I haven’t worn a cooling vest, but I definitely would. Also, I can see a wet liven scarf/wrap tied around my neck in the near future.

  5. Also I’m curious – what happens when you wave your Medic Alert bracelet around? Is it useful in some countries but not others? Should I get one?

    1. Medic Alert is supposed to be recognised internationally, but I’m honestly not sure if it will make a difference in PNG.
      I haven’t used mine yet, but I have it because I have been in desperate need of one before. Due to if fog in the middle of a relapse (when I was going home to be looked after) I literally forgot how to find my gate and I missed my flight. I was so out if it I couldn’t figure out how to even ask an attendant for help… Hence now having the bracelet.

      1. Sounds like a good idea! I imagine that would have been a hairy experience. You’re right about PNG – I really don’t think it will make a difference there. My emergency kit is looking good though.

  6. Packing an emergency kit and keeping it with you at all times can be very helpful. Thanks for sharing the items you put in your kit.

  7. I will be travelling, to Mallorca, with my newly acquired electric wheelchair.

    Navigating the airports will be a new experience. But, I hope the effort will be worth it for a stress-free break.

    Hopefully, the only emergency tool-kit I will need will be a spanner and a puncture-repair kit.

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