hey folks, apologies for the deluge to come. it’s been a weird week
I saw my MS specialist for the first time on weds. he felt I was recovering well from my only relapse 18 months ago and, as such, decided against DMDs for now, believing the risks of drugs outweigh the benefits for me at this moment. I will have further scans to make sure. I trust my consultant (he believed a biologic pen I took for another chronic illness “unmasked” the MS) but I was pretty staggered - I knew I was gradually improving, but I was expecting to go straight on kesimpta, or something. has anyone else had similar?
secondly, I was out in london last night when I suddenly couldn’t walk - legs locked up, loss of balance. very frightening. I was sent to A&E in case of a relapse, but they thought that a viral infection and sitting in direct sunlight at a terrace had caused fever to spike, and thus MS symptoms to flare up. things settled down quickly after. has anyone else experienced this?
finally, I’ve noticed since the relapse I get ill very frequently - particularly in the months since my MS diagnosis in december; I have had a cold/flu at least 5/6 times and the last one two weeks ago. does anyone else get sick frequently with MS? I’d wondered if it was that or just the distress of the past year (my life had sort of fallen apart even before the diagnosis)
happy sunday! I hope you’re well
1 Like
I think it’s fairly well accepted that chronic stress interferes with immune function and makes a person more susceptible to infections. Stress isn’t very good for MS either. When I was first diagnosed 25 years ago my childhood GP in my home country told my mother: ‘tell her to avoid stress’. He was an unusually broad-minded GP who was more holistic in his approach than most. I didn’t pay much attention of course, but looking back I think he was probably right.
Keep careful notes of the things that are happening to you. Your neurologist is being cautious at the moment, but these things are always subject to review if things change. If circumstances change your specialist’s opinion will probably change too. Let’s hope this is just a blip.
3 Likes
thanks for this alison. my consultant could see I was pretty worked up about the whole thing, and made the point quite plainly that there is a point where that is pretty unhelpful. I wonder if this week has made that point on stress quite emphatically.
good point on the notes, too - I had done so up until the appt. I was unexpectedly encouraged by his prognosis, as it were, which made yesterday all the more frightening. but it seems to have calmed quickly and it does appear to have been a viral infection - the doctors in A+E were satisfied by neurological examinations..
1 Like
@jamesdjgale I was on a biologic injection (Adalimumab) when I got diagnosed with MS, I was told that it probably caused the worsening of my symptoms rather than being the cause as they could trace back a relapse years before diagnosis. Subsequently, I had to stop the Adalimumab.
I was put on Ocrevus as I had 2 different relapses in the year of diagnosis (different parts of the body).
It could be, depending what your other condition is, that the CD20 dmts could cause the other problem you already had to worsen. I have been advised that it could happen to me on Ocrevus but both myself and the Neurologist thought the risk was worth taking and my other consultant (Gastroenterologist) was not really engaging.
2 Likes
yeah, agreed - it wasn’t thought to be the cause, per se, but may well have been an aggravating factor and he wanted to see how I fared without it.. I’ve stopped it since the diagnosis
im glad you’ve got treatment and I hope it makes the difference you need - all the best with it. i’ve heard good things about ocrevus
Hiya. Just responding to the part you mentioned about sitting in the sunlight am just seeing if your aware that being in the sun / heat can cause MS symptoms to worsen temporary. maybe that could of been the cause of your legs locking ? Am 28 been dealing with MS for 11 years but I stupidly only learned this past year how the heat and sun can affect our MS 
1 Like
thank you for this - it’s reassuring. what I needed to hear
I had heard that direct sunlight can irritate things. and the doctors thought the combo of a virus and the sunlight was what caused the legs to seize up - they have improved quickly.
I’m so sorry you’ve had to deal with this for so long. it’s all trial and error isn’t it?
1 Like