Last reply 1 year ago
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
3 years ago

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! 😉

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
3 years ago

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!


glenr
3 years ago

@stumbler – thank you for taking the time to research my wife’s diagnosis and for your sound advice. The Tecfidera seems to be a good treatment.. I’m wondering if the DR will get my wife started before we leave?

@cameron – thanks for the note – I’m sorry to hear that you find it difficult with the flights, I know they can be challenging at the best of times! interesting point about the insurance our Neuro who took care off us during the initial episode said that we should take out insurance as a Clinically Isolated Syndrome (CIS)


stumbler
3 years ago

@glenr , you can only discuss the commencement of the Tecfidera with your Consultant. They will know best whether your wife’s MS dictates a prompt start or whether it can wait until after your trip.

Your comments about insurance are “interesting”. Yes, you may be able to save a couple of quid on the premium by quoting the lesser CIS. This could be fine, if you don’t need to make a “serious” claim, but we take out insurance in case of anything terrible happening.

A few quid or peace of mind? MS is not quite the condition that hikes travel insurance premiums that high. 😉


glenr
3 years ago

Hi, hope all is well with you all

shiftMs members might remember helping me with various points on my wife’s treatment.

Good news is that we had a fantastic holiday!

Bad news is my wife has just recently had her third relapse and is hospitalised with paralysis on her left side and has problems with her speech. I’m so concerned and just don’t know where to turn.

Some background:
My wife’s CIS was in November 14 right side paralysis and then she was diagnosed with Balo concentric sclerosiss / rrms …had a relapse in feb 15 optic nutritis and now this.

Morale is a little low so wanted to understand if her rate of relapse and severity thereof was abnormal ? have other shiftMs members have had to deal with awful relapses like this? Did you recover ok? Any advice ?

Thanks


stumbler
3 years ago

@glenr , no two people ever have the same symptoms or the same progression. That’s the frustrating part of MS that no-one can give you a definite prognosis.

You just need to take the pressure off both of you and ride this storm out.

Tell your wife to chill out, and trust her body to fix itself. The more she can just relax, the quicker the body can heal…….


tabbycat
3 years ago

If heat has not been a problem in the past, it is unlikely to be so just because your wife has been diagnosed. I am no doctor, but I do know that diagnosis can seem like the end of the world and it isn’t and it very important to keep doing the things you can for as long as you can, to keep up morale.
Good luck with whatever you choose to do. There is no wrong and no right, just what your wife feels comfortable with,because I am sure you both feel scared right now and that is ok too.


serankin
3 years ago

There are very few cases of Balo in the literature, 60 was a number I read in terms of the number of cases! Yes it is very rare! I would love to see the MRI results! Did they use contrast on the MRI? You see rings like an onion on T1. As far as I am aware it can be treated like any other autoimmune disease and like any inflammatory MS.


glenr
3 years ago

@serankin

Thanks for your note –

I’m aware that the case number is nearer to 100 globally now – there is not a lot of information on outcomes, prognosis etc.

I did request the MRI results and asked for copies of reports and MRI but was told by the dr that I can’t have the actually MRI footage because only drs can request it… I found that very strange? I do have a copy of the latest MRI written report , surprisingly this one does not make reference to BALO lesion just a new 3 cm lesion. I did see the first MRI and her first lesion was 2.9 cm with the BALO concentirc pattern.

My neuro at kings has not really made any fuss about the fact it’s BALO which is reassuring, he said “this is MS and we are going to treat it aggressively” so we are gonna go for lemtrada in May.


us-emma
3 years ago

I have taken Lemtrada with amazing results. Please let me know if you have any questions or need guidance. I am happy to help.

I am glad to hear she and the docs are considering this route. I believe it is the best treatment we have & as a newly diagnosed patient she is an ideal candidate.

On a side note, I live in a less humid area and find I get more fatigue & huge amounts of lower leg swelling in humid environs. My presenting MS symptom was LL swelling so maybe I am extra sensitive to this.

I recently traveled to Hawaii for 2 weeks & had LL swelling daily that resolved overnight. I was a but surprised to see this return because after taking Lemtrada a year ago all swelling had ceased. I guess I am not up for humidoral challenges…

Swelling resolved post travel & has not returned. I used to have to wrap my legs at night & wear suspension stockings during the day so only having this symptom rarely is a blessing.

I also second the notion about coach vs first/business class. We were bumped to coach when our orig flight was canceled and first was already full on the only other non-stop option. 8 hours in coach took me a week to recover from…

I hope your wife gets Lemtrada and never progresses to stages she has to worry about such things 🙂


Anonymous
3 years ago

I can’t see why you can’t have a copy of the MRI. It’s easy to order at my hospital and costs £50. I’d double check that and quote the data protection act.
http://www.nhs.uk/chq/pages/1309.aspx?categoryid=68


serankin
3 years ago

My MRI pictures cost £10, you don’t usually have to pay the full £50 unless you want the full copy of all your records. My Avatar is set as one of my MRI pictures. Nice “ring” like lesion don’t you think? It is actually a black hole, just high water content – filled with fluid! Balo lesions have to show rings on T1 with enhancement. As you can see, I was curious to see if my lesion was Balo, but it isn’t I don’t think.


glenr
3 years ago

Interesting MRI pic, when I have the Scan I will share with you. Your lesion seems to be neat and tidy! by that I mean , my wife’s lesion was a “whirl” shape concentrated in the centre with the onion type lines and then dissipates outward. Out of interest how large is that lesion ? Do you know? How’s the lesion affected your symptoms ?


msmom12345
1 year ago

Humm I wonder if you will ever see this if I reply since this was from 2015? Worth a go I guess..

I have had a Balo sclerosis lesion show up on my MRI and I am changing my MS med to Lemtrada now. I found this by googling and as you know there is not much out there for reference. . especially for DMDs and Balos.

I am wondering how your wife is doing now? I hope all is well! 🙂


stumbler
1 year ago

@msmom12345 , we haven’t seen @glenr in the last 18 months. But, he will be notified by e-mail of this activity on his post………


msmom12345
1 year ago

@stumbler thanks for the reply!

I hope to hear wonderful news!!

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