Hi everyone.
My partner was diagnosed with MS 6 months ago so this is still very new to us both. The neurologist we saw 6 months ago said he was very pleased with how healthy my partner was and that there was no need for any treatment at this stage. He told us that he had relapsing/remitting MS and that it was going to be a small annoyance every now and then. As you can imagine we were both quite pleased with this as my fiancé is only 28 and he didn’t need to change anything.
Fast forward to yesterday. We have his next neurology appointment and nothing has happened since we last went so we assumed he would be in and out and all straight forward. This wasn’t the case. The neurologist we last saw has now retired and we have a new, younger dr looking after him. He said he strongly disagrees with previous dr about no treatment and thinks my partner should be taking medication now. He said it concerns him when he has a male with MS infront of him without any treatment. He also informed us that he is allowed treatment as has had 2 attacks within a 12 month period and that’s the only way to get treatment. He also told us that my partner will get secondary progressive MS at some stage in his life.
This may sound stupid but we didn’t realise he would eventually get worse. The first dr made it sound like an annoying little thing that may come and go every few years…
So my fiancé has now been referred for treatment. The dr has mentioned four types of treatment, injecting once a week, injecting three times a week, or there’s two types of oral pills.
I just wanted your guys experiences and if you think treatment is the path to go down as we are in complete and utter shock to get such conflicting information. Sorry about the long post
The story on who should be taking disease-modifying drugs and who shouldn’t is not a black and white one. Were your two neurologists to spend the evening discussing their preferred approaches, each one would most likely reach closing time as convinced as ever and having failed either to change the mind of the other or to prove him/her wrong.
The older neurologist probably spent a good chunk of his professional life telling people with MS to go away and make as good a life for themselves as they could and good luck because that was all there was to say. Then the DMDs arrived and maybe he was not convinced and found evidence of their efficacy rather weak and maybe his personal professional experience backed that up and convinced them that early intervention brought precious few benefits, particularly for people whose MS seemed pretty quiet. It is a respectable view, still, although probably somewhat unfashionable nowadays.
The younger one has grown up (in professional terms) in a different world - a world in which the pharmacy is bursting with drug options that actually affect the course of a person’s relapsing/remitting RRMS. They can’t cure it, and some would argue that the DMDs aren’t nearly as effective as they ought to be given their tremendous price tag and the potential side effects and actual faff of taking them, but that’s a slightly different argument: the fact is that they exist and that, over time, there does seem to be evidence building up to suggest that the sooner someone starts on DMDs, the better their central nervous system survives the barrage of MS damage that is likely to assail it over the years.
It isn’t just a matter of different generations of neurologists, though. I had my dx back in 1999 and the DMDs were just becoming available, although it was a bit patchy. My neurologist then was very close to retirement, but he was nevertheless moving heaven and earth to get me and his other newly dx patients with very active RRMS onto Avonex, and he did and I will be forever grateful.
There are genuine differences of opinion within the professional community. Your new guy sounds very much more my cup of tea than your old one, though!
Alison
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I think the old one retiring is a blessing. MS is progressive. I don’t wish to scare you but its a serious illness leaving the majority of people with various degrees of disability. The wait and see response is outdated. Referring to MS as a small annoyance is somewhat paternalistic and not helpful at all.
The good news is there are several treatments available now for those with remitting relapsing to slow the progression down. Some are much more effective than others. Much research suggest the sooner you act the better the long term outcome. When weighing up the pros and cons think long term. MS generally starts as a small annoyance, you want to keep it that way. Listen to the new neuro.
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Thank you both for taking the time to reply to me. It’s much appreciated.
I said to my partner that I preferred the new Drs opinion as he has grown up with the newest technology and drugs available. It’s just really scary knowing that one day he could be seriously ill with it.
What do the drugs do? Prevent more attacks or just slow down the onset of secondary progressive MS?
Which treatment did you decide to go with any why? Each option seems to have side effects and while he is healthy now, with having the have treatment and deal with the side effects it’s making my partner feel more like he will have an illness, whereas at the moment, it’s not really there?
Sorry about all the questions, just a bit overwhelmed and if I’m honest, terrified.
Thanks x
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A very good question. Certainly the former; not the latter, as far as I am aware. Here is a link to good information on the main part of this site.
Avonex because that was the only one available and, some years later when my MS became too strong for it, Tysabri. WIth me, it has always been a matter of trying to stay one step ahead of the MS, or at least keep pace with it.
Good point, but in reality he has the illness already. Not taking a DMD won’t change that. One of the hardest things to get one’s head around on DMDs is that it feels so odd to be taking heavy-duty meds that will neither cure nor even make one feel immediately better. They’re all about managing risk. For me, that has always been worth doing - MS is a dangerous enemy.
Alison
The jury’s still out whether the newer more efficient drugs delay or prevent SPMS. They’ve not really been out longer enough.
What the evidence is clear on is relapses leave damage and it is the accumulation of damage / used brain reserve which can cause problems later on. I don’t have any symptoms or disability at the moment. I chose treatment because I want to safeguard my health and independence as best I can.
I chose Lemtrada. I wrote a post on my decision and reasons for here News & stories | MS Trust
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Well said. If the more efficient drugs do turn out to delay onset of SPMS then hurrah for that, but even if they just minimise the accumulation of damage/loss of brain reserve arising from relapses, that’s plenty good enough for me.
Alison
Thank you for your responses. It means a lot to me that you’ve taken the time to answer my annoying questions and share your experiences. I feel I’m going to be spending a lot of time here as your all so helpful and the information is brilliant.
Thank you again xxxx
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I take Tecfidera a tablet twice a day for RRMS. Have blood tests every three months and routine annual brain MRI scan. I’ve not had many side effects just a little flushing and indigestion now and then.