Newly Diagnosed

Hi everyone.

I was wondering if anyone had any advice on how to decide on whether or not to take DMDs. I was diagnosed at the end of June 2018, at 28, (both of my legs went numb as well as parts of my left arm and body), was told my MS was very active (had lots of lesions) and after my relapse subsided I should start an aggresive treatment. After 2 rounds of steroids and plasmapheresis my symptoms gradually went away. Then in September I had another relapse (right side of my face went numb and I had really bad pain in my face), which went away after a course of steroids. I was advised to start Ocrevus but because of some complications with elevated liver enzymes I couldn´t start it right away. Now my enzymes have gone down (although we still don´t know what was causing them to be elevated) and I have to make the choice on whether to take Ocrevus or not. The thing is I mostly feel really well (I have some occasional tingling as well as some memory problems), have more energy than I´ve probably ever had (I started on the OMS program almost immediately after diagnosis) and am just having a hard time saying yes to something that might make me feel worse (not to mention all the serious side effects it could have), especially since it´s such a new drug and not a lot is known about its long term effects. I want to do everything I can and I realize the fact that I feel good now doesn´t mean I always will, but it´s very hard to make such a tough choice when I feel so good now. I know it´s ultimately a decision I have to make for myself but I keep going back and forth on it and am feeling quite overwhelmed so any advice you can offer would be greatly appreciated.

My partner is in the same situation except for having Optic Neuritis and 4 months in she still hasn't gained all her sight back in that eye. I think the fact that it was her eyes and that she is really scared about anything happening to her other eye is what will make her try a DMD. Like you she started OMS straight after diagnosis and is doing everything she can to stay well. We are awaiting an appointment to see if her Atlas needs adjusting.

It's an impossible decision, you just don't know what to do for the best. Especially if in yourself you feel well.

I hope whatever you decide works out well for you x

Hi Mtvesuvio, thanks for taking the time to reply. Yeah, I think if I had eye problems I probably would also be leaning more towards the DMDs, but as it is it´s a hard call to make since I feel fine. May I ask which DMD your partner has opted for (and is it the one that her doctor recommended)?

She hasn't had her appointment to discuss the options yet. It is in April.

I have had MS since February 1997. I initially did not want to take any DMDs, but then after some years I started to take copaxone. However, as the years passed I noticed that diet had a far greater effect on the disease than anything else. I noticed that if I, for example, ate cheese every day for a week, I would have a relapse.

As I have a lot of lesions on my spinal cord, and on my brain stem, my doctor has stopped prescribing copaxone for me, and is trying to persuade me to move on to Ocrevus, but I really do not want to do this, as my life involves a lot of travelling around on public transport and I am constantly around people and so exposed to all the viruses that are going round, and so I really need my immune system to be functioning. Whenever I have an MRI there are new lesions (which is why the doctor calls my MS highly active) and I often have problems with my eyes and my hands, but the problems are not sufficiently debilitating, yet, to make me take a drug as drastic as Ocrevus.

My doctor wants to see no sign of disease activity, which is why she pushes these drugs, but I accept that at the moment MS is an incurable, progressive disease and think that the goal of the doctor is a little unrealistic. I, however, know that I feel a lot better, physically and mentally, sticking to the OMS program, so that is what I try to do: I would have to be very desperate to voluntarily knock out half of my immune system.

I am also quite irritated that with Ocrevus (and most of the other DMDs) everyone gets the same dose no matter how much they weigh: I brought this issue up with my doctor, who said that it is too expensive for the pharmaceutical companies to do the relevant trials. Which puts me off taking the drugs even more, as the pharmaceutical firms are clearly more concerned with their profits than the well-being of the people taking their drugs.

Anyway it is a very personal decision, but I feel better when I am actively doing something to help myself, rather than passively sitting in a hospital having drugs (with some potentially very serious side effects) dripped into me. The disease is unpredictable, but living healthily helps at the moment…

I guess we need to decide for ourselves but diet can work you just need to find the one that works for you. Whats your diet currently like?