Hello
What an absolute kicker, diagnosed with MS at such a young age. I am sorry. It’s a sod of a disease no matter your age at diagnosis, but I’m sure to be at the start of adult life you just want it gone, out of your life and finished with.
Unfortunately, MS is a contrary beast, it won’t just vanish if you ignore it. Taking a disease modifying drug (DMD) is like having insurance on your car. You may not have an accident, but if you do and you’re uninsured, there are all kinds of problems to be faced. Having relapsing remitting MS means not that you ‘might’ have relapses. It almost certainly means that you ‘will’ experience relapses. So the insurance policy of a DMD is more important than anything.
A DMD is supposed to reduce the number and severity of relapses. Their effectiveness is balanced against the risk of side effects. Some of the DMDs - the older style ones - have low relapse reduction rates but few side effects (eg Copaxone). That would mean you’d be taking the drug for a good long while. But it wouldn’t necessarily impact your life in any way. The relapse reduction rate is low though, only about 30%.
The mid range of drugs like Tecfidera, have a better relapse reduction rate (about 50%), but more side effects and again, mean taking on an ongoing basis.
The highly effective group are much more effective, but the risk of side effects is higher.
Have a look at https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid The decision aid tool helps you to see the benefits and the risks for each drug. You’d need to find out what your neurologist is prepared to give you, but it’s definitely worth considering.
In your position, and given your age, if you qualified for it, I’d give Lemtrada a serious look. It’s got an amazing relapse reduction rate anything upwards from 50%, but many people are disease free for many years (or forever) without the need for ongoing drugs. It has a big side effect potential, but for the benefits, it might be worth taking the risk. And it’s an infusion that you take 2 or maximum three times, each dose a year apart.
You could have a look at the forum on https://shift.ms/ There are a lot of younger people on that forum, many of whom have taken the riskier more effective drugs. And I dare say, were probably as keen as you not to take any drugs.
It truly is extreme bad luck to get MS, but once you’ve got it, you need to think of ways to make it be just a small part of your life. And taking a DMD is better than suffering disabling relapses. Believe me, I know.
So, as Val said, talk to your MS nurse, give drug treatment some serious thought, and make sure you do everything else you can, diet, exercise, vitamin D supplements, downtime and proper rest.
Best of luck.
Sue
. I have two young girls amd it’s very tricky luckerly my husband has been able to help x
. Can’t phone anyone as they won’t do anything just twll me to wait for referral. Just have to sit here and put up with it whatever is going on