I was dxd with RRMS in January 2015. Told that I 've probably had it since 1997. Now confirmed SPMS so a steady but slight and perceptible gradual deterioration.
So what actually ‘starts’ the MS off in the first place, in your view? I realise that this is pretty much a ‘how long is a piece of string’ sort of question though. In my case I was on a family holiday in Cyprus in August 1997; came back and had three months of aching all over and absolute exhaustion. I saw a consultant rheumatologist who said that I had fibromyalgia (which I hadn’t heard of at the time. Then it just sort of ‘went away’ until October 2014 when I saw a GP about falls and weird dropping of things I was holding. And finally the dx of RRMS.
For me one of my worst symptoms is fatigue, which will come on in a wave and very suddenly. I can usually deal with this by having a half-hour rest (lying down ideally then I usually drop off!) My son and his girlfriend have moved in together this weekend and I was thinking how much less I’m able to do these days (physically) to help, compared with say, 10 years ago? And I do resent that.
So not so much a ‘why me’ question but a 'why does it happen in the first place? one. I know the usual answers about causes for MS but what were your experiences?
I think of it as a bonfire. You pile up pieces of dry wood (risk factors): childhood in a sun-poor Northern latitude/family history of MS/cigarette smoking/exposure to this or that environmental/viral insult and whatever else. The unlit bonfire isn’t going to do you any harm. Then another risk factor arrives and this one is ablaze. Bad luck throws it on your tinder-dry bonfire and that’s when the trouble starts.
In my own case, I strongly suspect that the ignition source was the arrival of shingles, quickly followed, in the same part of my body, by my first MS symptom. Correlation is not the same as causation, so let’s just call it (to me) compelling circumstantial evidence! I’ll never really know, though. There are plenty of theories about what sets things off, I don’t think anyone really knows.
Bit chicken and the egg question. Personally I was quite ill with sickness, diarrhea and cuz I’mm epileptic and was puking the meds up, fits into the bargain. I’d bashed my head rather badly and they diagnosed ataxia. Could not walk in a straight line. A junior dr pushed for me to be CAT scanned and MRI scanned. Got better slowly and a YEAR later the GP says - You have MS!! WTF??? Well, we wanted to be sure… Now would they have picked up the MS without me being ill, in hospital and getting tests? Were the side effects of epilepsy meds hiding symptoms? (apparently yes) As far as I’m conerned theres not triggers - its just shit happens.
I think you hit the nail on the head there reddivine. [removed by moderator] happens. I think we’re just the unlucky ones that [removed by moderator]happened to
It’s only natural for anyone to try to find a reason for why a bad thing has happened. There are many theories as to the causes MS but nothing that can be described as a cure. Most people have a burden to carry throughout their lives so I don’t feel that I have much cause for complaint. We live in a society that cares well for it’s disabled. I would not like to live a country like Ghana where, “men and women were shackled because they each had a mental or physical disability, and the chains were part of their treatment, along with beating, starvation and worse.” The country where disabled people are beaten and chained - BBC News Anthony.
Hummmm well I think it was a cocktail of vaccinations that triggered mine. Actually I was ok until i had to have the yellow fever jab to live in Africa. Not long after I had my first symptoms but the neuro said i couldnt have had it way back in the eighties as i would be totally bed ridden now. but i still think the amount of vaccinations i had travelling with the forces and when dad was in RAF didnt help. Also stress of a broken marriage, and things really got busy when my dad died in 1997 and in 2000 i was blind with an attack with what finally turned out to be ON.
Definitely the ‘how long is a piece of string’ theory! For me it’s probably best not to know the cause, as I’d find some way of blaming myself for getting it! That’s just me… Louise
I blame my mother. But then I tend to blame her for a lot that went wrong in my life. I go along with the Philip Larkin poem, which I won’t quote here because of being modded.
My mum’s just told me that I had glandular fever in my teens and in my opinion I shouldn’t be taking antibiotics so I didn’t, maybe coincidental that I then fell down the stairs leaving work smacking my head and breaking my left elbow and right wrist. A few years after developed symptoms of numbness and heat sensitivity, bladder issues, left foot drop and various other sensory issues.
