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Concerned Brother

My sister as had MS for around 2 years… You will have to forgive me as I am not as read up as I should be, but that’s something I tend to address… She was diagnosed with Recurring Relapsing MS… but quite serious, so much so the Specalist wanted her to go on the strongest medication…

She chose not to, mainly due to the side effects… I am not sure if that was a good or bad decision… She is due to go on a new medication next year… again some really scary side effects, but she thinks it’s best, as it reduces the “attacks/relapses”.

I have a ton of questions, and hopefully some people can help me answer some of them…

Currently she is suffering from almost non stop head aches… She also suffers from stomach ulcers, so has to be careful with what she takes for her head aches…

Anyone have any experience of this, and any suggestions of what she can potentially do to reduce the head aches, or anything she can take ? Any help greatly appreciated.

Hi Concerned Brother,

It is nice of you to be so concerned, and to want to learn more. So please don’t take this the wrong way, but your sister needs to speak to her own doctors about how to address the headaches, and not rely on information a relative gets from a forum.

The reason is that we cannot possibly know your sister’s detailed medical history. We cannot know for sure that her headaches are definitely caused by MS (many neurologists would say this is unlikely, and ought to be investigated for other causes), we cannot know if there’s any reason (apart from the stomach ulcers) she should not take certain things - we cannot know if anything we suggest might adversely interact with anything she’s already on.

Really, she needs to speak to her doctor - who will be well aware of the limitations of certain types of painkillers for a patient who has stomach ulcers, and may be able to prescribe something that is kinder on the stomach, or a stomach protector to make any damage less likely.

They may also want to look into the causes of these headaches, and whether it’s definitely MS. Ironically, repeated use of some painkillers itself leads to more headaches, so it could be the very things your sister is taking for them that are actually making them worse.

Nobody on a forum can know the answer to all these “maybes”, which is why it’s so important a doctor looks at it. The doctor should be taking a much more proactive role than just saying: “Be careful what you take, as you have stomach ulcers.”

They should be looking into WHY your sister has non-stop headaches (this is not considered a “normal” part of MS), and what she can safely do about it.

If you can, encourage her to see the doctor about it (I’m assuming your sister is an adult, not a child?) But also remember that her MS is her disease. What she does about it is her decision, whether or not you always agree. It is she who has to live with her choices, not you. It’s quite easy, for example, for someone who will not have to live with them, to say: “Maybe she should have accepted the risks and side effects?” Only she can make that choice. One person’s “acceptable risk” may be another’s: “Will not touch it!” - we’re not all the same.

Tina

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Just want to add summat.

people take paracetomol for headaches and it is a known fact, that this causes a re-bound headache.

My m-i-l used to take paracetomol all the time…hence constant headaches

thankyou for being such a kind and caring brother.

luv Pollx

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Hi concerned bruv,

It must be really hard for you - I had an MS-related meltdown in Waitrose yesterday, which made me feel like a toddler - and as I was coming out of it, I realised (again) how tough it must be for my lovely partner to cope with. We shared a free coffee and I managed to settle down, and he admitted to be baffled as to what to say on that occasion. It is so frustrating to have MS - to understand it and ‘help’ those you love,equally so - so you are FAB for being there for her. I totally agree with what the others have said - take the medical stuff to the GP to start with - book a double appointment so there’s enough time to talk - or the MS team. I think getting more info will help you too - there’s a lot of reliable stuff on this website, and the MS Trust website too. I’d say let your sister be the expert. Good luck xx

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Hi there
I agree with what everyone else has said… it’s not great for those of us who have it, but is equally bad for those who have to put up with us! You just have to trust your sister’s judgement on things, let her make her own decisions (maybe putting in your thoughts if requested) and respect those decisions. But good on you for wanting to help!

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Hi Becca, hope you are ok now hun. Was it the crowds, lights, sounds and a bit of the heat trigger off your meltdown. I stopped walking in supermarkets as it made me feel awful, so when I go now i only ever use a wheelchair and it really helps me. Family dont get it no way. No one understands the effects of MS, to be fair hardly any of us do either.

Just when we think we have it sussed another thing floors us.

I feel like a ballerina sometimes pirouetting all the time, from one daft symptom to another lol…

Sending you a big hug. xxxxxx

MERRY XMAS. xx

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golden girl’s reply made me think of the trafford centre which is not far away from us.

i took my boys there one christmas and all i can do now is shudder at the thought.

that was 16 years ago and i only got diagnosed with ms 8 years ago.

there are loads of strange happenings before my dx.

makes me wonder if i had ms way before my dx.

anyway, i suppose ignorance is bliss, if i had known then i wouldn’t have enjoyed those years.

Concerned Brother

bless you for your concern but i agree with the others - your sister needs to start with her gp and get these headaches sorted out.

carole x

Hi Catwomen i agree i think the symptoms are with us way before we realise it.

I remember going into a supermarket with my daughter at the very start of my journey when I wasnt sure what was going on. Next thing i remember is flying literally forward almost landing upside down in the freezer lol. It was funny at the time. My daughter said what on earth are you doing mum, and I said i have no idea, I LITERALLY FORGOT HOW TO WALK for a split second, i had no idea how to walk…it was bizarre…

Then the time a few weeks later I bend slighty at a shelf, and just totally overbalance myself and half the shelf of HP red sauce goes crashing to the ground lol… ooops.

Falling down the stairs at least 5 times, 4 times leaving me badly injured. I think people were starting to think i had a drink problem lol. These were over about a 20 year period though. One fall i totally forgot to step down and just went forward and landed on my bottom hard onto the bottom step. Fractured coxic. Sprained ankles from over balancing myself when out, falling down stairs and busting a foot, falling forward down a slope totally missing balance, and fracturing both wrists lol… ooops.

Dropping things, plates, you name it something would be on the floor, oh dear how did I do that lol. Car keys constantly on the floor rather in the door lock.

Sorry dont want to de rail that nice lads post, but i just wanted to answer you. I do think it starts earlier…if we do a time line we can see when it started. Mine was in 1981. xxxxx

Agreed! I was diagnosed mid-forties, but think I’d had odd things since mid-twenties - so a possible 20 years. When I was first diagnosed, I reckoned it was only “six or seven” years, but since then, I’ve had flashbacks to things years earlier, and wondered: “What the heck was that, if unrelated?”

I remember my mother saying: “You take a lot of painkillers, for a young woman!”, and replying, rather irritably: “Well,I get a lot of pains!”

I was always tired, and it was a family, and occasionally (sadly) even a work joke that I needed a rocket up my backside. “Take more water with it!” was also a common tease - even when I’d not touched a drop - because of my erratic balance.

Sports physio saying I had the shortest calf muscles he’d ever seen.

Years thinking ALL shoes were badly made, because I couldn’t find a single comfortable pair.

There have been loads and loads of things.

Tina

x

Hey All… Thanks for the input, I most definitely will be letting my sister make her own decisions and support her in those… I know she has an appointment with her Doctor in Oxford early next year, and I want to attend that with her… I guess it’s hitting us all hard, but of course she is the one who truly as to go through it, and deal with the effect it’s having on her… Sorry again for my lack of knowledge, but she has I believe it’s called Relapsing Remitting MS, but I do believe she has a pretty extreme case of it… I had seen articles about people who pretty much were living a normal lifestyle… but it’s really hit her hard, as I mentioned before the Doctor wanted to put her on the strongest medication from Day 1… she they estimated had 3-4 relapses(attacks) in the first year, which they said was really high… She goes on a new medication, only been out a while early next year… I can only hope and prey that slows things down, she is such a beautiful human being, I wish it had been me and not her… And yeah the headache issue, I guess I was only asking incase anyone had some tips on things they had tried, but of course your right it does need to be investigated in more detail and got to the bottom of… again thanks every one for your input… have a great Christmas

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just remembered the name of a herbal remedy for headache instead of paracetomol…

feverfew…not saying it will suit everyone, but just mentioning it.

pollxx

I’ve often thought that it’s our closest friends and family who suffer, sometimes more than we do, with an MS diagnosis. W get to complain and shout and moan about it, whilst you get the role of worrying and supporting us.

Your sister is lucky to have you caring for her welfare. I know I feel lucky every day that I have a husband who takes on that role. He knows less than I do about MS, but he probably does more worrying and thinking about it than I do.

Sue