Hi All, hope you are all as well as you can be. Are you like me? I am fed up with MS specialists not agreeing about MS. Specifically is our immune system compromised or not? They just cannot agree. If they can’t, what luck do we have? I feel that we must have a compromised immune system. It is being attacked all the time, it must be compromised? What does immune- mediated mean anyone? I would love your thoughts on this, be interesting to know what others think. Keep safe, Anne
Hi Anne, it does my head in the these so called specialist’s don’t always agree on MS, I see 1 they say A I see another and they say B, it’s so confusing and I agree, if our immune system is attacking itself, then surely it’s compromised, GRrrr
Jean x
Hi Anne i think my immune systems very over active.I never get any colds,hardly any infections. When i do my MS goes into the background while ever the infection or virus is present and then as soon as it goes 6 week after i get a nasty relapse that can last for months on end.I stopped going to see any so called experts as i think we are our own experts in our own MS.I was told for years i was secondary progressive and now they are trying to say i have it very mild,even though i am virtually bed bound and i have hardly any mobility at all.I feel i am progressive relapsing as im still having very bad relapses.I never did have much faith in them but dont have any at all now,so i will do what i have been doing for nearly 30years and look after myself.
Hello
I think some people’s immune systems are compromised, often from the effects of disease modifying drugs / steroids. Others, especially in the RR category, have super strong immune systems. That’s why we have relapses - because our warrior cells in the immune system, whose job it is to destroy alien invaders to the body, mistakenly attack our healthy tissue. In MSers it’s specifically the myelin that’s attacked in error by the stupid fighter cells.
Often an infection (eg a UTI) or a virus (like a cold or flu) sparks off the immune system into ‘attack’ mode. This would be why we don’t always get common viruses that float around. I’ve never had flu, even when I’ve not had the jab, and Only very rarely get colds. Bacterial infections, like UTIs do sneak past the immune system and can be nasty. But having a UTI can make MS symptoms worse: a ‘pseudo relapse’. This is why UTIs should be ruled out before taking steroids. Steroids damp down the immune reaction, that’s why they work on relapses (mostly, unreliable devils that they are!) and steroids together with a UTI can cause the infection to go bananas (official medical term!)
I suspect there is a difference for people without relapses, ie the PP and maybe the SP amongst us. They don’t have relapses, so their immune system isn’t behaving in the same way at all. And it’s slightly different again for those with progressive relapsing, although they (we - I’m one of them) probably fit more with the RR model.
This is by no means a scientific or expert opinion, just what I think.
Sue
I think the fact that specialists take differing views just reflects the state of the science. It’s a bit like Covid and how to deal with it: there isn’t a universally-held scientific position on any of it, because there isn’t yet the evidence to support one. And even when a consensus view emerges, it will always be subject to challenge and change. No certainties under the sun, I’m afraid. I mean, there isn’t even any real understanding of what causes MS and how, dammit! If they can’t agree on that, small hope of htem agreeing on much else!
Alison
Alison
jaydee - same here - a cold or flu virus seems to knock out the m.s. (temporarily!)
I had a nasty injury a while back (fractured pelvis) and my MS really faded into the background as if it didn’t like having competition!
It has remained in the background and although my pelvis has healed, I have since had a bad fall indoors and my back is permanently sore. I now seem to have acquired a lot of bad language which I use in private when it all gets too much.
At least it is meant to be in private but occasionally I’ll mutter “f,. off” then notice my son standing nearby and add “not you”
Oh really, just recently acquired the bad language? So you didn’t have the habit before? At all? I’ve had the bad language fairy visit me years ago and I doubt that she’ll ever leave!
Sue x
Hi, I`ve seen 17 neuros in 22 years and they couldnt agree on owt!
Boudsx