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MS treatment

I was diagnosed with MS on December 2014. Since then I have had symptoms such as dizziness/vertigo, numbness and tingling sensations. All of these have been manageable, and I didn’t take any medication. On 17 June 2017 I had blurred vision and vertigo which lasted for a couple of hours. It did not last 24 hours so do not know if it would be classed as a relapse. When I discussed this with my MS nurse, I was told that it could linked to MS or dehydration because it was hot that night.

A MRI scan from July 2017 showed an area of currently active multiple sclerosis change in my neck and also an area within my brain.

At previous appointments, my MS nurse and neurologist have asked me to consider treatment which could limit the number of relapses. I had an appointment with my MS nurse on 27th December where we discussed treatments.

I am reluctant to take any treatment because all the symptoms I have suffered from have been manageable and I didn’t take any medication. However, I am aware that MS is unpredictable, and a relapse could happen at any time.

So my question is this : should I have treatment or not?

Any advice given would be appreciated.

As you have said “MS is unpredictable, and a relapse could happen at any time.” Why would you not take treatment if it’s offered to you? Personally speaking i’ll take anything that’s gonna help slow this down. I may or may not have a relapse without the medication but i’m hedging my bets.

‘A relapse could happen at any time’. Might you have answered your own question with that statement?

There might never be another relapse, or it might be a mild one you can easily get through. Or it might be the big one that takes you off your feet for months. Not a risk I wanted to take.

I’m on one of the old DMDs, Betaferon which is still working for me. At least, I assume it is, in the absence of relapses. It’s certainly not doing any harm and gives me peace of mind that I am doing all I can.

Good luck with whatever you decide to do.

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And I’m someone, like Val, who’s had MS for years and had bad reactions to DMDs. So haven’t been on one for most of my 21years since onset. And I’m now badly disabled. Mostly due to one specific relapse, but there have been several along the way that have added to the problems. I now use a wheelchair almost full time, and a walker plus FES for a few metres at a time. Personally I’d advise taking a DMD. A bad relapse can do immeasurable damage. And anything you can do to prevent that is worth it, in my opinion. You just need to balance out the cost and the benefit. The cost being side effects and the benefit being relapse reduction. But, ultimately it’s your choice. Best of luck. Sue

Interesting,

I am quite a fan of not taking medicines; however I was diagnosed in 1991 with RRMS when the treatments offered were “wait and see and steroids if there is a relapse.

I have now moved to SPMS and I have access to a more enlightened neurologist who said that nowadays the drugs available can reduce the frequency and severity of relapses and the “wait and see” approach has been replaced with a “intervene early to prolong a quality of life” so whilst I respect your position I wish I had the option to access DMD’s at an early point in my MS history.

Whichever way you go I wish you all the best.

Mick

I don’t understand when you get offered DMD. My last MRI showed active lesions but I haven’t been offered treatment yet. It also looks like the choice is now been restricted.

Hi Chatterbox. I never was offered it, I had to go and ask but that’s going back years, when they were first available on the NHS. Things are different now but even so, ask your neuro.

Good luck

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No, you shouldn’t have the treatment. You are doing o.k. so why risk rocking the boat.

Thanks Val. I will. My concern is that if I’m having silient lesions then there will come a point when I have another physical symptom. It’s not like you have any warning - I’d like to try to minimise that possibility.

  • I take a v o n e x,that’s nearly a year I have been on it.I went for a 6month m r I .and there was 2 New lesions .3 of the 5 that a showed up 6month previous were significantly reduced.
  • So I feel that the d m d was a gift to get . Neuro says that sometimes the brain can appear to heal,God only knows.now he feels that after a year I will need to go on a stronger d m d
  • So all I stay is “go” for it. Only u can decide…

Whilst I normally avoid taking drugs, I decided I was more afraid of unchecked MS than the side effects of DMDs - so I jumped head first into the “hit it as hard as possible, as fast as possible” approach to Ms management. I’m just coming up to 6 months post Round 2 of Lemtrada. My only MS symptoms were annoying (but not painful or disabling) numb toes and groin for a few weeks two years ago. These symptoms have completely cleared up and my neuro describes me as “asymptomatic” clinically - and my last MRI showed no sub-clinical activity. So my MS could be described as benign/ mild at the moment - but I decided the risks of the DMDs were worth taking to improve my chances of it staying that way. I’ve had no issues with the Lem so far - fingers crossed it stays that way (although as with the MS, only time will tell).

Recognise everyone has a different approach to weighing up the competing risks of drugs and MS and the only right answer is the one you feel comfortable you can make on a “no regrets” basis - just though I’d add my tuppence worth to show a different approach ​

good luck!

The people at Barts suggest treatment as early as possible.

Like others have said, you never know when the next relapse will come or how bad it will be.

Back in the old days (like about 8 years ago) I was offered DMD treatment and put it off for six months. In that time I had two minor relapses, and the Copaxone just slowed things down for a couple of years. But I went from EDSS 1.5 to EDSS 6.5 in that time, and was re-diagnosed as SPMS so no more DMD.

Stop faffing around and ask for a modern DMD.

Geoff