Hi everyone! My name is Marlena and I’m 38. My journey with MS started in 2016 when I had neuritis of my optic nerve in right eye. Back then, it was diagnosed as isolated neurological sydrome and I was discharged from neurologist. My vision in that eye never came back fully so I’m partially blinded on it. After 18 moths or so, I started experimenting dizziness and feeling off balance so I was refered back to neurologist who requested MRI and I was diagnosed with relapsing/remitting MS. Since, I’ve been seeing neurologist yearly and having yearly MRIs. A year and half ago, when I saw my neurologist, he said to me that they discovered 2 new lesions in my brain but he didn’t think my MS was very active so he requested another MRI which was supposed to be done August last year but because of Covid, it postponed till this March just gone. I had a follow up appointment with a neurologist this week and it was confirmed that I have 2 new lesions comparing to my previous scan from 1,5 years ago. I have reported increased frequency of feeling dizzy and off balance this year and the neurologist told me that where the new lesions are, they seem to be in the part of my brain which is responsible for balance. That would explain why I feel more dizzy this year. So now I was told they think it would be a good idea to start me on first line of treatment. I’m petrified for variety of reasons. Could anybody give me some advice please? I am mobile and experience no issues with motor function at this stage but my neurologist said they are thinking about my future condition, rather than how I am now. Sorry for the long post…thank you for any advice. Marlena
I wrote a similar question yesterday. I am in a similar situation in that I am ok right now and don’t have symptoms -I actually discovered MS accidentally . Nevertheless, it was recommended that I start medication asap to prevent further damage. This was recommended by my neurologist but also quite a lot of the people who answered my question. Good luck!
Thank you Chris. When did you start taking meds and what were you prescribed, if you don’t mind me asking?
This is a very personal decision, and it’s agonizing to make.
I’m one of those who’s had MS since long before the drugs were created, and part of me wonders how I’d be today if I’d taken them way back when. That said, it was only after some 38-40 years that I reached the point of having to quit work, and I still live alone and get around (mostly) on my own two feet.
My diagnosis took all that time, and when my neurologist suggested Ocrevus he added that he didn’t think it would work for me but that it was my only chance. I did try it, but I wound up having all of the “possible” side effects with the first infusion, and the next year was an endless cold, sinus infection, trigeminal neuralgia, tooth infection (that led to most of my teeth falling out), and clogged ears. I took more penicillin that year than I have the whole rest of my life, and I decided that being sick all the time wasn’t worth the slight chance that Ocrevus would work long term.
I have no recommendations for you. It’s a gamble either way. Some of the drug treatments do wonders, and others come with frightening side effects. Just do your research and get your neurologist’s thoughts on the subject.
Sorry to hear about your difficult times…Thank you so muvh for your reply. And like you said, the decision is so difficult because MS has different effect on all of us and no one can predict what’s going to happen. Although the first line of medication is suppose to have the least side effects on your body, I wouldn’t be happy to find out that my heart, liver or blood cell develop abnormalities after taking it. A part of my brain is telling me live the healthiest you can because healthy body and mind will fight not a body that is being put in risk of being damage by a medication that may not even make any difference for you condition
I haven’t started taking anything yet, I am doing the blood works now. They recommended tecfidera or avonex but I prefer the pills.
I think I would prefer tablets as well, Chris if I decided to take any
Why don’t you give it a go (with a positive mind) and if you see they don’t help or you have bad side effects then you stop. They are supposed to monitor your white blood count whilst on tecfidera so as to avoid any serious complications. Best of luck, whatever you decide!
There is a school of thought that the best treatment plan is to go with the most effective drugs as early as possible, thereby stopping the disease in its tracks before permanent damage is done. I spent a decade following diagnosis on a first line treatment (copaxone) with occasional mild relapses from which I recovered quickly and quite fully. However things were progressing without me knowing and the last 6m have been tough, impacting on mobility, concentration, mental health, bladder control. If I could go back in time I’d definitely push for the strongest drugs as early as possible.
Thank you very much for the reply. Could you tell me your experience with on this medication? initial side effects and further impact on your body that you know of, if any?
The struggle I have is that we don’t know the medication actually helped you, my understanding is that your MS could have been progressing as it has, regardless of the fact that you are on medication. Correct me if I’m wrong?
I don’t think they can offer stronger medication to me at this stage? Just first line of treatment?
The problem is that we will not know if they are helping. My neurologist said that the idea is to keep you on them ongoing and we will never know if they are actually making any difference
I don’t know Marlena, you could be one of the lucky people that only ever get mild MS without meds but you won’t know in advance. I think you need to calculate your risk for each option and then decide. I’ve actually not yet had any symptoms (any that I know of) but my neurologist thinks based on my MRIs and other tests, there is a risk I will have symptoms in the next few years and is recommending medication. Another doctor recommended I wait and see. But I think I will go with the more proactive approach. It is, very much, a personal choice though…
This is actually really helpful for me to read StDomingo. My neurologist called me to ask if I prefer to go on avonex, seems my lesions are asymptomatic and I seem to have very mild MS. But I am more inclined to go with tecfidera which is a bit stronger. If I am to take the risk of DMTs, I might as well go for the better one. I do worry about PML though, so I am hoping I made the right choice. Your hindsight is invaluable to others!
Absolutely and that is why I’m so glad I posted on here. Talking to you already is helping with my thought process. Difficult decision to make…
I got on fine with copaxone for several years. Minimal side effects. Occasional injection site reactions (i.e. a bit of a red lump where I’ve injected, that lasts a few days but is totally manageable). There is another scary (but harmless) reaction where a few minutes after the injection it feels like your having a heart attack, followed by shivering for 10 mins or so. That was pretty scary but only happened a handful of times over the 10yrs or so I’ve been taking copaxone.
Hi, If it was me I would start DMT as soon as you can. I was only diagnosed last year but have had MS for over 20 years only the symptoms were never connected - now I have SPMS and the damage has been done, so if I was diagnosed before and was able to go on meds I may not be where I am today.Even a small change is better than no chance
Thank you for that
Hey, I’ve only just been diagnosed and have an appointment next week to discuss and medications to take.
I’m on the fence too as presently my symptoms have been annoying but relatively minor. I also had 7 years between relapse.
Part of the reason I’m reluctant is that I’m still nursing my one year old so will at least wait 6 months I think.