Hi there. I was diagnosed with MS this week following a positive lumbar puncture and saw my new MS specialist consultant yesterday. He said the option whether to start treatment or not is totally up to me. My MS is currently not active and he said used the phrase ‘why crack a nut with a sledgehammer’ but would not give his actual opinion as to whether I should start a DMD or not. He gave me lots of information about the different medications and sent me on my way to decide.
So my question is…has anyone else been in this situation and what did you do? This kind of took me by surprise as I expected to be told what to/not to take and I genuinely don’t know what to do now.
Don’t know if this makes a difference but the residual side affects I am still experiencing, numbness, nerve pain etc, he said should get better with the Gabapentin he has prescribed.
Thanks all!
Hi there. I’m slightly surprised too. My understanding is that the current medical consensus is that it’s best to start with a disease modifying treatment/ drug as soon as possible. Others might know better than I do but I think one school of thought ( in the MS treatment world) is that it’s best to start with a fairly high efficacy treatment.
I’ve been taking Avonex for some 18 years. It’s one of the lower effect drugs but I started within a few weeks of diagnosis. Would I opt for Avonex now? Not sure but there weren’t many other options when I was diagnosed. I do sometimes think about changing but after 18 years I can still walk ( but not for more than 15 minutes or so) and at 70 years old I am generally active.
That’s my experience and views. I know that there are plenty on this site who use other and more recent drugs so see what they say.
All the best
Starting treatment is always your choice.
But what you are offered depends on your symptoms and your consultant.
While many departments do subscribe to go in hard and early others have a wait and see approach.
Because of the nature of Multiple Sclerosis and its many mimics the possibility of misdiagnosis is always present. Also the effective drugs are powerful and not without the risk of potentially severe side effects.
The MS Society and MS Trust provide useful information to explain all this and help you to evaluate what to do. It is not an easy choice and not helped by people telling you their own experiences as it is a sample of one.
MS is a lifelong condition, but you have time to weigh up the pros and cons of the different treatments. Your MS nurse is normally your best ally but in the end the choice is yours.
Thanks for your reply. That’s what confused me because all the paperwork I was given said to start treatment as soon as possible but my consultant said it was up to me whether I wanted to wait a while.
Thank you. Think I will speak to the MS nurse when she phones.
I would just go for it. Ask the neurologist and MS nurse if there is any doubt about the diagnosis but otherwise start as soon as possible . As CRD says some of the most recent stronger treatments carry risks but they are rare and you will be monitored carefully and can change treatments ( actually even Avonex carries some rare risks ). I also think all treatments carry some temporary side effects - Avonex makes me feel pretty rubbish the next day and I usually just take it easy, laze around, watch TV or whatever. I think that is pretty much par for the course for those using Avonex.
If you look at this section of the forum and also the one on Symptoms and Treatments you will probably find some comments and discussion about different treatments.
I was never in doubt about receiving treatment. My Aunt had MS in the days before treatments and I definitely didn’t want experience her decline.
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Indeed, starting treatment is your choice and it depends on your relapse/s. After two relapses within 3 years, I had no option but to start treatment. In fact, I am on pregridy, which is not that strong, but after I hopefully have a baby, they will switch me to heavier, more high efficient stuff. That may sound weird, but the treatment has improved my mental health. It’s just because I have MS and I know that I am actively doing something about it, to help myself somehow. Ultimately the decision is yours.
Maria
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I’m sorry that it feels like mixed messages when what you want in these troubled waters is a clear steer. Informed consent is quite proper, but my view is that the consultant has spent years and possibly decades learning about this stuff and I haven’t. What’s the use of that if they won’t put that knowledge and experience into action by telling me what they think I should do!? Sorry, I must stop ranting.
I am sorry that you are having such a tough time. I couldn’t get on a DMD fast enough (there was only one available back in the day, so that’s what I got at the time). And yes, that was a strong recommendation from the neurologist, not that I needed one.
The thing about MS, once the damage is done, it’s done, and my personal preference has always been to go for the strongest treatment indicated for me.
What DMD options have you been offered?
I don’t really understand the difference between relapses and just symptoms, if that makes sense, so I’m not really sure. I had a grand mal seizure which is what kicked everything off, so I am assuming that was a relapse but no idea really.
Plegrigy was one of the ones I had information on which looked like perhaps a good option to try if I decide to opt for treatment now. Do you mind me asking how you get on with it…side effects etc? Thanks for commenting!
You summed that up perfectly re the consultant having the knowledge to advise and I couldn’t agree more. I haven’t been offered any particular ones yet just given a big table with all the options and side effects etc. If I decide to go for it, I think that’s the next conversation to have.
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Thank you for commenting. No doubt over the diagnosis. Consultant said he is confident as lumbar puncture he classes as ‘gold standard’ when diagnosing. I’m heading towards thinking I want to start something now. Worried if I wait and then something happens like the decline you have mentioned your Aunt experienced, I would kick myself for not trying everything to stop it.
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That sounds like being given a table of careers with their key features, rewards and drawbacks and being invited to choose one!
My hope is that the neurologist knows that there’s only so much a person can take in at one consultation (too right) so is leaving that conversation for another day.
The MS website explains what a relapse is. Sorry, I don’t have the link handy. A quick search will explain things. 
I am not going to say that plegridy does not cause issues, because it does. It causes an erethyma on the injection site, this is manageable with witch hazel gel. During the first months, straight after you inject, it causes migraines, weakness in arms and legs, fatigue, pain in the body for 2-3 days, then it gets better… I started mine in January this year, and I now only experience a day of fatigue, weakness, and migraine straight after the injection, on top of the erethyma. I inject on Wednesday night. On Friday morning, I am 100% back to normal (but the erethema appears a couple of days later and stays for about 10 days). Straight after the injections, I simply take paracetamol for a day. At this point, it suits me, as I inject every couple of weeks, and that’s it. It’s suitable for women who try to conceive, that’s why I chose it. I am not working at the moment, but if I go back to work, hopefully soon, I’ll will switch my injection day based on the day I will be working from home in a hybrid role.
If you ask me how I feel with plegridy, pretty good is the answer. My muscle twitches have gone away. I have no issues or anything. My next MRI is in September.
Just a note, plegridy can intensify depression symptoms, so I wanted to share this point. It is not for everyone. My mental health is reasonable as matters stand, but others may be affected differently.
Whatever you decide, please talk to the MS nurse, mine was super helpful. Tske care.
That’s what I thought too. On to the next conversation I go
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Thank you so much for your detailed reply. Best of luck on your baby journey!
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Im signed up to something called MS News Today ( cant remember how or when). Coincidentally, One of the bits of news today is about research in Germany which found that an increasing number of people who started on low/ medium efficacy drugs are switching to more effective ones. I havent read the paper in full but will do and im thinking that when i see the MS Nurse in July i should discuss this with her and consider whether i should change from Avonex - a relatively ‘low’ efficacy.
Hi,
It’s really hard to get these mixed messages… my understanding has also been that starting a high efficacy DMT as soon as possible is the best way to prevent long term damaage. So the “nut” you are cracking is not something affecting you now. It’s a nut that will hit you in 20 years if you don’t act.
Not all neurologists seem to take this line, but a lot now do. You could have a look at Dr Giovanonni’s views on his blog (he’s an NHS neurologist based in London). You could look at the ECTRIMS patient day broadcasts via youtube - ECTRIMS is the European MS research conference, they do patient days each year summarising research. I think the 2023 one had a whole episode on the finding that early, tough intervention improves long-term outcomes. The problem is that if you wait for more brain damage to occur before acting you can’t turn back the clock - the drugs don’t reverse the damage.
Effectively, there are two approaches out there: the “escalation” appraoch (use the mildest treatment possible if symptoms are mild, escalate if you must) vs the “early intervention” approach (high efficacy DMT from start, to prevent future damage).
You could also seek a second opinion. I think you have a right to request this via your GP, on the NHS. That might take some time - the (expensive) alternative is to go private, but in that case make sure the person you see is really expert in the field (e.g. relevant research publications on MS). You could also put some of the research findings on early/high efficacy intervention to your existing neuro if you trust him/her.
Like you, I have very mild symptoms (almost nothing). I was told at first that I could “do nothing” or take a very mild drug.
I then saw a different neurologist, who gave me more choice. And I am now on a high efficacy drug, Kesimpta. I’ve been on it for 4 months and had almost zero side effects - getting on with my life.
Really what prompted me was facing up to just what a horrible disease MS is, especially advanced MS. I’d have accepted quite a lot of risk to delay that, give myself longer, hope for more treatment to come through - in the end though, fingers crossed, even the “highly effective” drug has been a piece of cake to be on so far.
Again, sorry you are not only confronted with this nasty diagnosis but also with a lack of clear guidance. Once you are on your treatment, whatever that is, things may settle a bit.
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Thank you for your detailed reply and the research information. I will definitely take a read of those. Such a minefield…which I am now discovering seems to be the trend with MS and the treatment!