I was recently diagnosed with MS based on lesions on brain and spine MRIs and a positive CSF test. I seem to be asymptomatic (which was confirmed from the physical exam) and the lesions were accidentally discovered after I had an MRI done for a small accident I had. I think I am either what they call radiologically isolated syndrome or mild/benign MS (for now at least). I am 41. I am getting conflicting views whether to go on medication or not. One neurologist suggested I wait 6 months and repeat the MRIs and another thinks I should start now and gave me the option of avonex or tecfidera.
I donāt know what to do. I am (soon to be) a single mother of 3 children under 10 years old and this is the last thing I expected after a very difficult year.
I know I should feel lucky I am asymptomatic and I hope I havenāt offended anyone by asking this question. But any thoughts would be must appreciated
Hi,
Sorry to hear youāve had such a tough year.
I think before you decide anything you need to get clarification on your diagnosis. There is quite a difference between āisolated syndromeā and ābenign Msā. In fact you canāt be diagnosed with benign ms at the start, you need to have been asymptotic for 10 years or more, but maybe they can date the mri changes? Either way Iād definitely ask for more of an explanation so you can make an informed decision.
For clinically isolated syndrome thereās no guarantee it will ever progress to full blown MS. Some neurologists prefer to start patients on one of the safer and less effective drugs anyway in the hope of preventing the progression, some say watch and wait.
As far as Iām aware tecfidera (which I take) is only offered if youāve had 2 or more relapses in 2 years, but it may differ in different parts of the country. But I suspect if thatās on the table then you have an ms and not a clinically isolated situation. If thatās the case then my personal view is start treatment, donāt wait 6 months to see what happens because some of what might happen is really not good! But thatās just my personal perspective, I have a relative who has not taken any drugs for her ms for a good 15 years and sheās still mild and fully mobile etc. So it really is a lottery and no one can say what will happen to you.
Anyway, good luck with whatever you decide to do and make sure you push for them to explain your diagnosis to you fully. Good news is that for now you are in a really good position to take control and manage it effectively whether you choose to do that with medication or without.
Sending lots of positive vibes your way!
Charlotte
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Hi Chris,
Youād have to go some to offend many people here. Asymptomatic sounds great, long may it continue. If you have a firm (?) diagnosis, you need to discuss medication that might prevent damage which could lead to problems further on. I was diagnosed in the āwait and seeā era and regret missing the opportunity to delay oncoming issues. Good luck
Mick
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Why wait until you get worse before deciding to take treatment? The evidence suggests that the sooner you take a DMD, the better the long term outcome.
Obviously, I am delighted to hear you are doing so well and hope things stay that way, but MS can be quite unforgiving if left unchecked.
MS-Selfie - Risks of no treatment (google.com)
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Thanks Charlotte, this is very helpful. I think I will start on tecfidera. I had a conversation with my neurologist again and he is worried for possible cognitive damage that may not be reversed. What has your experience been on tecfidera?
I went back to my neurologist today (the one in favour of aggressive approach) and we agreed to start on tecfidera. He said there might be cognitive damage you are not aware of until it gets worse. You are absolutely right. Thanks.
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Yes, the MRIs showed demylenation and the CSF was positive. Also I had tests to exclude other autoimmune diseases or diseases that mimic MS. One neurologist I saw is of the wait and see era and the other two have a much more aggressive approach and suggested tecfidera. I decided to start with the medication and I am doing the check ups for that in the coming weeks. Thanks for your response, much appreciated.
Your forward thinking Neuro has clearly put your mind at rest and donāt need any further confirmation, but this site is a reliable source of information, in case you ever need it.
Asymptomatic lesions
Most of the focal MS disease activity that occurs does not cause any overt symptoms because the brain has a way of compensating for damage. For every clinical relapse there at least 10 or more lesions that come, and potentially go, on MRI. Therefore what we see clinically in terms of relapses is the tip of the iceberg. Even standard MRI is relatively insensitive in detecting and monitoring MS disease activity. The standard MRI misses new lesions that are smaller than 3-4 mm in size and does not detect the majority of lesions that occur in the grey matter of the brain (cortex and deep grey matter nuclei, e.g. thalamus and basal ganglia). Therefore MRI activity is also the tip of the iceberg. This is one of the reasons we have started using spinal fluid, or CSF neurofilament levels, as a marker of this microscopic activity.
Do I have active MS? - by Gavin Giovannoni - Prof Gās MS-Selfie Newsletter (substack.com)
Hey, had a positive experience on it overall. Took a while to get used to, Iād say about 2 months for any side effects not to bother me. Before that it was hot flushes, but they were very short-lived when they happened so not like I was suffering all the time. They lasted about 1/2 hour and happened most days. Now I get the odd one here and there but itās mild enough not to bother me much. Havenāt had a relapse since taking it and started on it last October xx
This is exactly what I read Whammel, thanks. And yes, one of the neurologist I saw was in favour of treat early, another was in favour of wait and see etc. Btw is the MS unit at Barts hospital a good one to be referred to? I heard a lot of good things about Prof G.
I did use Barts up until a few years ago, but decided it was pretty pointless and stopped, as there are no approved treatments for my PPMS. No reflection on my Neuro though who was a decent enough bloke. However, I have met Prof G a couple of times and can confirm he is impressively open minded and would be a good choice. Whether you could get him is another matter, as I think he has stepped down for a bit following a cycling accident. No harm in asking, I guess.
Your Neuro seems pretty on the ball and looking after your best interests, so might be worth sticking with her/him, especially if they are an MS specialist.
I am very sorry that you are having a tough time.
It is bad news that you have MS, but very good news that it hasnāt done much damage yet. As a veteran of 20+ years of RRMS, my reaction is that you should make the most of the horrible news you have had by doing all you can to get on top of your MS before it starts doing the very nasty things it can do. It is clear that your priority is to stay as well as you can for as long as you can, for your own sake and that of your young family. I think that means facing this MS business head-on and starting a disease modifying treatment as soon as you can. I know it feels all wrong to be taking heavy-duty medication when you feel fine, but thatās the point of these kind of meds: their benefits lie not in the here and now but in the future. Itās like saving for the future: no fun now, but the benefits come later. What you are saving in this particular context is brain function, and that is definitely worth doing.
Good luck.
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The neurologists I saw so far have been abroad, where Iāve been for the summer. This whole mess came up in 5 weeks and as the health system is different and quasi private, I got all MRIs + spinal tap done in 10 days! Iāve asked my GP to refer me to a London MS specialist when I am back in London, so I was wondering whether to ask to go to Barts or to Queens Sq which is more convenient to me.
Thanks Alison, that makes sense. I will go ahead with the meds and hopefully everything will stay as it is. The neurologist I saw said that the meds will most likely help me stay this way and I am honestly hoping that what he tells me is true. Iāve been reading a lot about MS the last few weeks and it does seem that it is worth taking the risk with medication early on ā¦ I hope you are doing well.
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I had sciatica in the last month of my pregnancy 8 years ago and my neurologist is worried that could have been an episode. We donāt know so we are erring on the side of caution and being proactive. Many thanks for the response.
Apologies, I understand now. I think Queens Square has a good reputation and Professor Jeremy Chataway is based there and he seems to be involved in a few MS Trials. Personally, I would go for the more convenient option, but canāt make a recommendation based on experience. The FES Clinic is good, but thatās not much of a guide.
I hope you get some positive reports that allow you to make an informed choice.
Professor Jeremy Chataway : University College London Hospitals NHS Foundation Trust (uclh.nhs.uk)