I’m Adrian 39 and I live in London. I was diagnosed with MS last week. I still don’t know what kind of MS I have, because I had only one shot, namely double vision. I had this shot 2 months ago. I was hospitalized, my tests were done, and when the results arrived, the doctor told me not to worry now, but in 15-20 years. I already have muscle spasms, I get a little tired faster than before, walking is a bit harder. I wonder if there are any medicines for such a thing, to be able to work, as I have worked so far. I’ve been working on the site for 6-7 years since I’ve been in London, but I feel and realize that I can’t go on. Sometimes I panic, and I wonder what I will do next. I will have an appointment in 3-4 months with the MS assistant, and in August with the neurologist. My question is: when I start taking MS medications, will I be able to work the same way? or, will I still be able to work?
Thank you very much!
Hello Adrian
Welcome to one place you never dreamed (nightmare style) you’d have to be!
You sound extremely anxious and deeply worried about your future. This is normal. MS is not an easy thing to get your head around, you are doing pretty much what anyone does when presented with a diagnosis of a disease that, honestly, is not quite as bad as it used to be.
If, like about 85% of people diagnosed with MS, you have the relapsing remitting variety there are disease modifying drugs available to help stave off relapses (aka flare ups, or instances of disease activity). You’d know this if your symptoms have come and then over time (could be weeks or months), possibly with the aid of high dose steroids, completely or partially recovered, then you can safely say it’s RRMS.
Often the assumption is made that it is RR (on the balance of probabilities) until and unless after some time it becomes clear that your MS is progressive.
So, having established that it is likely to be diagnosed as RR at least initially, you then come to consider drug therapies to ward off relapses. These drugs are not a cure. Their aim is a to reduce the number and severity of relapses. People call them disease modifying drugs (DMDs) or disease modifying therapies (DMTs). They are one and the same.
There are now many DMDs. Your neurologist and/or MS nurse will discuss these with you. You should be given the choice of at least a few different drugs. Have a look at MS Decisions aid | MS Trust for information about the various drug therapies.
What is important is to balance the benefits (aka probable relapse reduction rate) against the costs (aka potential for side effects). So, for example, one drug you are very likely to be offered is called Tecfidera. It offers about a 50% relapse reduction rate against fairly manageable side effects, none of which are tremendously serious. It’s an oral drug which makes it attractive to many. A less effective injectable drug is Copaxone, even less side effects but only a 30% (ish) relapse reduction rate. Then there are more serious drugs. It will depend on how aggressive your MS is considered.
By no means do you have to consider that your life is over. Serious disability tends to take a lot of years to arrive, if indeed it does. Many people are completely able bodied, working hard and having a totally ‘normal’ life 40 years after diagnosis.
Keep posting on this site, let us know when you have questions - remember we are amateurs who can tell you only our own experience or direct you to places where you can get reliable information.
Best of luck.
Sue
Thank you very much, Sue for your encouragement and for this golden information, which for me is extremely valuable at the moment.
I told the neurologist about my mother, who was also diagnosed with MS in 2015, and was given “Tecfidera”, which at the time was being tested in Italy (my mother works in Italy). and I understood that I will start, like my mother, with this medicine, “Tecfidera”.
It was a big surprise for me, when reading this message, I was very happy, and I feel very encouraged and supported (that is, I am not alone) and I thank you very much for this.
Thank you!
Hello and welcome. It’s always enjoying to meet up with a new one. Enjoy!
Not a problem Adrian.
I’ve just reread a bit of your post which I’d not really taken note of.
It’s in relation to symptoms and drugs to relieve symptoms. Spasms can be treated with baclofen. You should be able to get this prescribed by your GP. The idea is you start off on a very low dose (10mg) and see if it works on the spasms without making your muscles weak. It can be a wonderful drug, but sometimes makes people’s legs too weak and weedy!
The second thing is fatigue, this is probably what’s slowing you down. (Believe me, I used to walk so fast I’d forever be asked to ‘slow down’! Not a problem anymore!) This will be more difficult to resolve with medication. There are a couple of drugs that can help. The most annoying thing is that the drug which works best (Modafinil) is virtually impossible to have prescribed now!! Apparently some people had bad reactions to it. Such a shame. There’s another drug which could be prescribed probably just by your neurologist, called Amantadine. Not as good as Modafinil, but it does work for some people. (You could ask about Modafinil if you get really bad fatigue!)
Otherwise, it’s all about fatigue management. Have a look at Fatigue | MS Trust Basically it’s about concentrating on one thing at a time. Trying to stop yourself pushing too far. Break tasks up into small jobs. Make sure you get some exercise and build up your muscles so nothing is as physically tiring.
It might actually be a good thing having a mother who’s been diagnosed before you (obviously not for her!). She will have learnt a lot about MS and the symptoms; hopefully she’ll be a mine of information.
Sue
Thank you very much! I really appreciate that!