Relapses and ranting

Symptoms and treatments
1

OK, so I’m going to have a bit of a rant (warning!)

For the last month, I have have been experiencing issues with both arms (stinging sensation/numbness/dragging/weakness). I was getting over a chest infection that required 2 weeks of antibiotics, and it was suggested to me that this infection had caused this flare up.

Things got so bad this week I contacted my MS team again, and yesterday I went to the MS relapse clinic. After seeing a very nice registrar and much discussion, plus discovering my right arm has a definite weakness in comparison to the last time it was recorded, it was decided…no, no relapse, maybe a pseudo-relapse, maybe a flare-up as I’d had an infection.

I’ve had MS now for over 20 years. I’ve taken multiple DMTs (currently on Kesimpta). I realise that the only way to perhaps definitively tell if I have new activity is to have an MRI “in the moment”. But what irks me, as a long timer, is the reluctance to to even countenance the idea that you might be having a relapse. I know I’m on a very effective DMT, and it’s not like I want to have new activity, but I sometimes feel that the definition of “relapse” needs to redefined.

Is this reluctance down to not wanting to upset the patient? Or if it is a relapse, this might mean switching DMTs because it might indicate the one you are on isn’t working well enough? I don’t want the NHS to be put under more strain by having needless MRIs, but I do wonder if neurologists’ language doesn’t match up with the definitions we might see on this website, for instance. I’ve experiences this for years, this general reluctance to say “it’s a relapse” when the definition of a relapse that we all know has been met. Do things need to change? Do health professionals need to change their criteria, or do we need to think of relapses differently?

Anyway, rant over. Whether it’s a relapse or not, my arms are still not right, there’s not a great deal I can do about that.

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Good afternoon. I feel for you. Have you put pressure on them for an MRI? I was told that pseudo relapses are not at all unusual after infections. It might as well be a relapse, but if you are unsure, MRI will tell. I had symptoms similar to yours in my second relapse, although my main issue was both hands going numb. Arms were hardly affected. The difference is that I did not take steroids and nothing was done about it… they did not know I had MS back then, but this led to the diagnosis. So - to make a long story short, it took me almost 9 months to regain normal sensations in my hands…

I still remember how, one morning, I woke up and my numbness in both hands was gone overnight… Relapses seem to happen suddenly, sometimes overnight, and go away suddenly. I was in Mexico City for a month, visiting my in-laws, and maybe the lack of stress plus the sunshine helped my hands recover.

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I’m part of a study where MRIs are done quite frequently, so they said, “well, you’ll be having one done before Christmas so that will pick anything up”. I don’t really mind, it’s just over the years the criteria in the literature for a relapse doesn’t seem to match up with the reality of a health professional saying you are having one. If the only cast iron way of “proving” it is by having an MRI, which cost time and money, do we as patients need to understand that a relapse will not be classed as such unless new activity is recorded on a scan? I come at this with a very open heart - I don’t want to switch DMT, I don’t really want an immediate MRI, but it concerns me that there is perhaps a disconnect between patients understanding (through what they might read on this excellent website, for instance), and the reality of the experience with a neurologist. Or it’s my hormones and I should just go back to bed! :joy:

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Dear Ranter :smiley:, I know what you mean but have come to accept what I think is the reality of MS.

Long reply but I think my experience is similar to yours. Diagnosed some 18-19 years ago and in the last few years my symptoms have got worse.

The MRI that resulted in my diagnosis was carried out after an episode of Optic Neuritis- I lost pretty much all vision in my right eye ( the vision did return). That MRI showed up ‘quite a few lesions’ in my brain yet at the time I was aware only of one symptom- optic neuritis.

Thinking back to the year or more before the MRI I had experienced some tingling in my right arm but i dismissed it as some weird thing and it went within a few months. Similarly with a previous episode of numbness in areas of one side of my face.

So, quite a few lesions but at most three temporary symptoms.

For the next 4-5 years I had no symptoms at all until one day, walking around town, I suddenly had difficulty moving my right leg. A difficulty which from then on, I began to experience after walking for 30-40 minutes.

My MRIs showed no change.

The distance I could walk without experiencing problems slowly decreased and is now down to 10 mins or so. Again no changes in MRIs.

About a year ago I was given an MRI after i suddenly found it difficult to lift my right leg - going upstairs or getting into the car. My right leg has always been the affected one but not being able to lift it was new ( and a bit scary, pleased to say I can now go up and down stairs and ladders). The MRI showed ‘no change compared to previous ones’

Particularly after reading Professor Gavin Giovannoni’s stuff on ‘smouldering’ lesions, my view is very much that MS isn’t easily classified into RRMS and Progressive etc, nor are all lesions visible/ easily detected and , as Giovannoni says , old lesions can ‘smoulder’ and over time associated symptoms can get worse.

For some reason I’ve always thought that , like any part of the body and over time, nerves will suffer from general wear, tear and repair but the ability to repair decreases with age and general ill health.

When I was first diagnosed I didn’t ask for details of the ‘quite a few’ lesions and have never seen the scan but I now think that it’s quite possible /likely that some of those lesions didn’t produce any noticeable symptoms because either the damage and ‘symptoms’ were slight and indeed not noticeable to me or because my brain ‘plasticity’ had found new routes for nerve signals.

Over time, however , the smouldering of some of those lesions has increased the damage a little and in the case where the original damage wasn’t sufficient to cause any particularly noticeable symptoms the subsequent damage resulting from gentle smouldering over the years has made the symptoms noticeable. So, in my mind, you can have new symptoms as a result of ‘smouldering’ of old mainly symptomless lesions.

Well that’s how I imagine it all and it sort of makes sense to me when you consider that in so called ‘secondary progressive’ you can still get new relapses and new lesions . Tend to agree with Giovannoni- MS is MS.

In some ways my take on MS is not good news for me - if 18 years ago the medics found quite a few lesions scattered around my brain, how many more are on their way to producing noticeable symptoms? I could well be talking total nonsense but for the time being it makes sense to me.

Best thing I can do is to keep my brain as healthy as possible - a healthy brain friendly diet and keep fit with exercise ( I follow the general recommendations/ guide on diet and exercise found in Overcoming MS along with general mantra of ‘what’s good for the heart is good for the brain’).

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What a perfect and considered reply! Good to see another fan of Prof Giovanni. Thank you for your response and yes, keeping things going and trying to remain active is good advice. Many thanks x

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I’m a 20+ years MSers too. I found I can usually ride out a light relapse/flare-up as long as it’s not too heavy, but when it occasionally floors me, then I know it’s probably time for another prednisolone top-up.

I’ve been on the Kesimpta DMT, since August last year, but have had to pause it due to Pneumonia in May, Parainfluenza in June and Covid, this August. I’m now reluctant to resume DMD treatments tbh, as I always seem to suffer the unwanted side effects, it works for some but not for all tbf.
Best,
JP