Last reply 4 months ago
Support and advice

Hi all, I am mid 20s newly diagnosed with MS.

I was told a couple of years ago I had CIS after a tingly episode on my legs, but I quickly returned to normal life and its been sitting at back of my mind.

However last week when I had my yearly MRI review they told me the classification has changed (to MS) despite no further relapses. I felt a weird mix of emotions, especially as they were pushing medication (Tecfidera) which I am trying to learn about.

Does anyone else have experience taking medication before having a second relapse? And if the side-effects will impact my life. The last two years have been ok without, but I dont want to do the wrong thing.

Also would be great to connect with some people for support, as a I dont know many people my age with health issues I can feel a bit alone.

Thanks!

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grandma
4 months ago

Hi Cactus, here’s some thoughts from an old codger, dxd 25 years ago, no drugs available, after relapsing 3 times in first year told I was ideal candidate for trial on Beta Inferon, went on trial which turned out to be dosage not placebo, great results, was on it for 23 years, just been changed to Tecfidera (3 months ago ) . The current thinking is to hit the beast hard and fast, the Tec is to prevent further relapses so though you haven’t had one at all they are looking to prevent it happening and believe me if they can prevent it happening in the first place it’s all to the glod cos beleve me you don’t want one unnecessarily!😍


rosiemcgx
4 months ago

Hi Kactus,

I’m 26 and have just been diagnosed with RRMS after a tingly arm/leg episode! It seems my first episode was about 2 years ago.

I’ve not started treatment yet, just waiting for my appointment to come through for the MS centre and generally feeling ok with a few wobbly moments!

Still a beginner to all of this but happy to plod along together!

Rosie x


stumbler
4 months ago

Hi @kactus and welcome.

It’s not unusual for an MRI Scan to show progression that you hadn’t noticed. MS doesn’t always makes its presence felt in these situations.

Tecfidera is a popular choice of Disease Modifying Therapy (DMT). You can check our previous posts about this DMT, by using the Forum Search function (magnifying glass, top left) and search for “Tecfidera”


vixen
4 months ago

Hi @kactus, I was put on Tecfidera a month after diagnosis; that followed the only one episode I’d ever had although I think on my MRI there were a couple of lesions. Some people do make the decision to not tread the DMT route at all, due to either side effects or the simple choice not to. Not sure how old you are, but there are lots on here ranging from late teens to very wise and senior!


kactus
4 months ago

Thanks all for your replies, means a lot to me. And lots of good advice!
Apologies if I wasn’t clear, there was no progression in my scan but they felt I was a suitable candidate for medication.

@rosiemcgx that would be great thank you! I’m 27, sounds like we are in a similar situation. Just would be nice to chat with someone that gets it 🙂 feel free to pm me

@vixen tanks for replying, how have you found the medication? How long have you been taking and did the side effects ease up over time?


vixen
4 months ago

Hi there @kaktus, I’ve now been taking it for a year. I have been fortunate in having no side effects at all. Occasionally, I get a fish of heat through my body two hours after but that’s it. There are lots of tips on here if you use the search box above. Good luck with whatever you choose 🙂


vixen
4 months ago

## I get a flush of heat, not a fish – that would certainly be an unusual side effect!


novemberrain
4 months ago

I had optic neuritis 20 years ago. I had no MRI. No diagnosis. I still have no symptoms of MS but many longstanding lesions on my brain after MRI last year. You might be like me with radiologically isolated syndrome. Some people only show up at autopsy stage without realising. I prefer this decription to benign MS. Ask your neuro for advice on this. Not on MS meds, and I won’t be pushing for them.


imbarca
4 months ago

@kaktus I dithered about taking Tecfidera for ages because of the side effects, but apart from the flushing, I really didn’t get any.

I completely understand where you are coming from; my MS was very mild in the early years and I didn’t want to mess my life up with medication. However, the only thing available then was the injectables that were inconvenient and of questionable effectiveness. You have much better options.

You may be lucky enough to have clinically isolated syndrome. But presumably something has changed on your MRI to make your neurologist change their mind about treatment? It’s quite possible to have new lesions that show up on MRI without experiencing a relapse.

It is entirely your choice whether you take medication but you need to make that decision armed with all the information. If you don’t mind reading scientific stuff, this really helped me understand what goes on in ms :

http://multiple-sclerosis-research.blogspot.com/2016/09/education-draining-lake-down-plughole.html

It took me several goes of reading but it helped me get my head around why treating early is a good idea. There’s a lot of other information on that blog if you want to poke around. Professor G is a big cheerleader for Time is Brain and early treatment


imbarca
4 months ago

Oops @kactus I mean!


kactus
4 months ago

Thanks @imbarca!
Im leaning towards taking medication for sure. Like you said pill form is a lot easier to get on board with than injectables. I can always stop if I get long and horrible side effects.
So my lesions have not changed, but I was told that they have just (last year) changed the classification, so if you have a lesion shown on MRI and the oligoclonal bands present then you are diagnosed with MS even just one episode.

And thanks @vixen very helpful to know, and less scary.

Does anyone have any tips about drinking alcohol and taking the medicaiton?
Im not a huge drinker but there are occasions where I do like to drink, Ive read as long as there is 30 mins either side its ok but wanted to check with your experience.

Thanks
Kate


maureena
4 months ago

Your lucky to have a forward thinking Neuro to apply the new guidlines and diagnose. Mine said that although published it didn’t change diagnosis here and still wants to watch and wait even though with new criteria I fit into diagnosis. Guess it depends where you live.


dmt727
4 months ago

@kactus can I ask what area u live in?


miapi
4 months ago

Hi @kactus,

My case is quite similar to yours. I am 28 and got diagnosed last year with CIS, but -guess what- the McDonald criteria got updated and I as well switched to MS, as a result of that..

I am also in a situation where I sort of feel that I don’t really have people my age in a similar situation as me to share my thoughts and feelings on this diagnosis.
So if you ever want to have achat let me know. I think it would be nice to exchange some thoughts..

Best,
MiaPi 🙂

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