I read your post this morning and to be honest, I am horrified by your neurologists attitude to DMDs.
It is very rare for me to say such things, but I truly believe your neurologist is wrong.
So I started looking for evidence to back up my belief that once diagnosed with relapsing remitting MS you SHOULD be offered a disease modifying drug. This is what I found. All come from reputable and genuine U.K. sources of information. This does not count as random ‘googling’.
First: https://multiple-sclerosis-research.org/2021/04/early-treatment-is-important-to-limit-accumulation-of-disability/ This is from the Barts Blog which is an excellent source of reliable information.
Then: What happens after diagnosis? | MS Trust In particular, have a look at the section ‘Exploring treatment options’. There is a statement ‘The earlier you start treatment, generally the more effective it’s likely to be.’ The MS Trust make it clear that ‘ a few months delay is unlikely to be critical unless your MS is very active’ but they don’t suggest waiting for more relapses before starting disease modifying treatment.
In this MSS publication, especially see page 22 -
‘Treatments: The benefits of starting treatment early
DMTs work better the earlier you start taking them. Damage caused by MS builds up over time. So the earlier you begin treatment, the more damage you can prevent.
How early is early treatment?
Doctors recommend treatment starts as soon as possible after you’re diagnosed. Within six weeks of being diagnosed you should have a follow-up appointment to talk about treatments.’
Then there’s: Disease modifying drugs (DMDs) | MS Trust
The Trust writers make it clear that it’s ‘generally accepted that the earlier you start, the better outcome & less disability.’
Thus, after reading all of these links, it is absolutely blindingly clear to me that the sooner you start taking a good DMD the better your future will be. There are people who are diagnosed after one MS episode and are given Lemtrada or another very effective drug. Clearly, we can’t compare ourselves to anyone else, our circumstances are always different to everyone else.
Your neurologist may be an expert on MS and very familiar with all the available drugs. He may be making an excellent clinical judgement based on your physical presentation, MRI and other test results and co-existing health issues. But if so, I don’t think he is making his decision particularly clear to you.
In your situation, I would write to him and give him the ‘benefit’ of my links demonstrating why a diagnosed person should be given the option of taking a DMD. You could decide for yourself that the possible side effects outweigh the benefits of a specific drug. It would be within the neurologists purlieu to decide which of the available drugs (MS Decisions aid | MS Trust ) you should be offered and on this subject both his opinion and the availability of facilities might be relevant.
In the light of suggesting you include some (maybe not all!) of the above links, it would be better to email. If you don’t have an email address to write to him (assuming you decide to - sorry I’m being very bossy!), then phone his secretary and ask for an email address. Usually that would be the secretary’s email and she could forward it. I would further copy your GP as well as your MS nurse into any such letter/email.
If you still don’t get anywhere and want the chance of a DMD, you could ask to be referred to an MS specialist (assuming your Dr is not one!) and/or contact your hospitals PALS (Patient Advice and Liaison Service) and ask for their assistance.
We learn very quickly to treat our doctors as ‘special’, with occult powers and knowledge. We find it very difficult to disagree with a hospital consultant when they have all their years of study and experience to give them the confidence with which to make pronouncements which affect us. But you should also have a part to play in tohe decisions related to your care.
I hope I’ve not been equally arrogant and obstreperous in this post. I just feel strongly that the newly diagnosed should now have the benefit of the drugs which did not exist in 1997 when I had my first relapse. Tell me to butt out if so! I’m a grown up, I can handle it. I just hope your neurologist is!