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@GlenR 

Last reply

GlenR

Balo Concentric Sclerosis

Hello All, I'm new here, I've tried posting this twice now so sorry if you see this a couple of times.. My wife was diagnosed with Balo Concentric Sclerosis rare variant of MS, she had her CIS in November 2014 she felt better then relapsed two weeks ago. We are going to kings college to discuss DMT on Tuesday. (tecfidera)... We have a lot of questions...this might seem very trivial considering our news. We are booked to travel to the Dominican republic for a holiday in early March. My wife is the chief brides maid .. so we have a big decision to make to stay or to go? .. health first obviously ! I'd like to know if any of the community can share their experiences of travelling to humid and hot country's ? all I read online is that Msers don't cope well with heat and humidity ! any comments or advice would be appreciated thank you Glen
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@Stumbler
@Stumbler
 

Hi @glenr and I can only see this post once. But, don't worry about things like that. We're a very informal, friendly bunch, so if things go wrong, we just put them right. But, it's good of you to join us on behalf of your wife. Now, I can't say that I've heard of Balo Concentric Sclerosis, but having looked it up, it seems indicative of most variants of Multiple Sclerosis, where the future is unpredictable. But, life itself is unpredictable! :wink: Tecfidera as a treatment seems to be well tolerated in most cases. It may cause some annoying flushing, which can be uncomfortable and embarrassing, but that diminishes over time. It can also cause stomach upset, so it is important to follow instructions and take the dosage after a meal, to mitigate this risk. As for heat intolerance, that is just one symptom of MS, which can quickly kick off another MS symptom of Fatigue. But, if you wife hasn't shown any signs of this to date, then just be aware but don't worry. You're right about heat and humidity and I believe it is that combination that causes MSers heat intolerance problems. But, I've found that if you lose the humidity then the heat can be tolerable. Do mention this trip on Tuesday, so that you can get the right advice. And, do keep asking questions and we'll do our best to answer them.....

@cameron
@cameron
 

The main problem I've found is with the flights, probably because staying immobile for so many hours has a bad effect on the musculo-skeletal frame. I can no longer do long-haul flights unless I go business class: if I travel economy, my MS-affected leg basically stops working for a couple of weeks. My other issue is that MS has had an effect on my 'thermostat'. I'm the first to feel the cold (so get freezing limbs) and the first to start sweating, so (....inconveniently and expensively) need air-conditioning in my hotel room. I would say: request an aisle seat/front seat on the flight and walk around as much as possible while in the air; go a couple of days early to recover from the flight before the wedding; take all the meds you might possibly need with you; insist on an air-conditioned hotel room; make sure your travel insurance covers you for the MS. Don't worry about the DMT - as @Stumbler says, you'll get all the advice you need from the neuro team. Bon voyage!