Hey all,
My partner was diagnosed with RRMS some years back. His symptoms are vague and life is more or less the same as before the diagnosis. He is 30 years old.
His doctor does not want to put him on meds yet. His argument was that there is too little of a pattern regaring the symptoms. I was skeptic at first, but figured I should trust the doctor. My partner didn’t question it as it came from the doctor. But I’ve been reading all over the internet that it’s super important to start treatment as soon as so it’s all a bit confusing.
So my question is, how have you guys’ experiences with diagnosis + starting treatment for the first time?
Thank you all.
The sooner you start treatment the better the outcome, so why wait?
Case study: does treating MS early improve survival? (substack.com)
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Where do you live? In the U.K. NICE regulates treatment dependent on the severity of the disease. This is somewhat controversial as if you are going to have the most severe rapid degeneration it would be beneficial to be given the most aggressive treatment as soon as possible. However, if you were only to have a single Incident any treatment is likely to have unnecessary side effects. Also time is often needed to determine the type of MS you have. Or indeed that you actually do have MS. Different consultants behave differently and some have become more cautious after complications from earlier DMTs were more complex than trials suggested. I do not think we have the evidence in depth to decide on treatment in the same way as something like prostate cancer where treatment options have significantly changed over time.
Genetic testing may guide treatment choices in the future, but none of the current treatment options are risk free and I would want to be certain of my diagnosis and type of MS before starting to take them. (I do take the most aggressive that NICE allows for my symptoms, but I am confident of my diagnosis and that I do suffer from relapses).
Thank you both for your replies.
We live in the UK.
He was diagnoes with RRMS after his second incident of optic neuritis. It affected his vision to some extend - lost some colour vision, some blurryness and difficulties with depth vision. His scan showed 5 lesions. He has other vague symtpoms like swinging moods, aches, tingling, feeling like he is spraining body parts easily, etc.
I guess what his doctor said was something along the lines of your comment, crd. He said there wasn’t enough of a pattern to determine what kind of drugs, despite five lesions in the brain, that he was so young still, and that the side effects would be greater than what he is experiencing now.
And I understand that, but when I hear about the importance of starting treamtment as soon as possible then I have my doubts about if we are actually doing the right thing. I understand that MS is never the same for anyone, I have just not met anyone who got disgnosed and not started treatment, so it left me worried for my partner who is not getting treatment.
I was told I needed to have had 3 relapses in the last 2 years before i would be eligible for treatment
I’m in Whammel’s camp on this one. And yours, I think. Thing is, when you’re dx fairly young, you have a lot of years ahead of you of MS shredding your central nervous system, and it makes sense to me to do move as fast as you can to head some of that off, or at least to kick it further down the road. For me, that means all the good lifestyle things that we can (and really need to) do plus as effective a DMD as the doctor will prescribe. My MS was aggressive from the start, so it was an easy choice for me - I was happy to take whatever they offered, and they offered what they had.
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I think the MRIs and my history were very clear cut for MS and my subsequent recovery from the relapse that ensured diagnosis clearly earns me Relapsing Remitting. My first treatment was chosen because my lifestyle was not consistent with continuous access to a fridge. Unfortunately low lymphocytes indicate a change and the lack of appointments are frustrating this. It took around 6 months to actually get the on to treatment from diagnosis pre COVID. Doctors are now more aware of some of the drawbacks of some treatments that were known but came into sharp focus with COVID. People accept theoretical risks, but less so when they are obvious.
Even disregarding costs, none of the available DMTs are as effective as miracle cures. They just tilt the odds in your favour and make you feel you are doing something. Some tilt things a bit further but usually with some increased risk of side effects.
No reason to be over concerned but look to the MS Trust and MS Society web sites for a balanced view.
I agree to starting treatment as soon as possible - just depends if the consultant will prescribe
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Hi there
You say doctor is this a GP or consultant who specialises in MS? Does he have a MS nurse as they can be handy sometimes in speeding things along?
Hugs
Min xx
Hi, 2 bouts of ON led to my RRMS diagnosis nearly 4 yrs ago. My vision returned but although good, not 20/20 like it was before. I started Tecfidera around 3 months after my diagnosis and have been relapse free since. 4 MRIs have been all clear, I’d recommend a DMT as soon as possible.
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Thank you for your reply. I guess he didnt have a choice but to wait as the neurologist didnt want to prescribe him any medication.
I see. My partner wasn’t told he needed a specific amount of relapses, but at that time that it was too difficult to map out what drugs to use.
Thanks for your reply. The neurologist does not want to prescribe saying he is so young and the side effect will probably make his current situation worse than what it is. But it’s all a bit confusing.
Hello! The neurologist said not to start treatment and the MS nurse agreed with that decision.
Hi
I have been diagnosed for thirteen years and haven’t yet started treatment (rightly or wrongly). I have around 8 lesions now but unfortunately 4 small ones have appeared relatively quickly so I now have to consider my options. That said I have very few symptoms, last relapse was Dec 21, before that it was 6.5 years but I clearly have silent progression. I’ve done what I have thought is right for me but reading the forums I’m persuaded that maybe I need a rethink.
I’m not sure if my 2 pennies is any help at all but just to say I’m still running etc and 13 years post diagnosis and without DMT’s - currently.
Best of luck with the decisions ahead x