I have just been reading the Barts Blog and on there they seem to think that there PPMS could in fact be a “benign” course of RRMS that has gone into SPMS without the person really realising that they had MS in the first place. The age at which people are dx with PPMS seems to be a similar age to when people with RRMS get SPMS. On reading posts on here over the last couple of days there are many who noticed signs or symptoms years and years before. Many would say that it would be no real difference which label you got PPMS or RRMS because there are no treatments anyway. This could change as there seem to be trials being done at the moment on SPMS. In essence people may not get the right treatment if they have the wrong label.
I myself had l’hermittes in 1990 and small episodes of it after that once every few years. After clear scans etc this was always put down to a side effect of my radiation treatment. What I have now may be down to the radiation (as one neuro believes) or as another thinks - benign MS which has gone in SPMS or PPMS. Hardly matters if there is no treatment but if treatment is there for one of those conditions I would want to try it, regardless of the label!
Hi Moyna, I have so often wondered about this very thing!
In my mid-twenties I suffered terrible periods of light-headedness and vertigo which was put down to anxiety.
Through my twenties, thirties and forties I would regularly get a very painful hip causing me to limp. Also in my forties I would have regular periods of one of my wrists being so painful I couldn’t even wriggle my fingers… which would disappear ‘like magic’ after 24 hours.
And fatigue… again regular periods of fatigue… which I thought was anxiety, laziness, depression… you name it.
One incident in my mid-thirties I remember… I had just had a hot bath and when I got out I couldn’t walk. Sat on the edge of the bath for ages feeling unbelievably tired (what I would now call v.bad fatigue) and couldn’t stand up for about half an hour.
That was about 25 years ago!
It would certainly explain a load of stuff over my adult life that was always put down to anxiety or hypochondria… which everyone who knew me believed I had and in fact I believed myself.
My family were so shocked when I was finally dx with MS as they had thought it was all part of my hypochondra. But I now believe I might have been having MS symptoms for all those years.
Very interesting. Thanks for post… food for thought!
Pat x (can’t help thinking of the words on Spike Milligan’s headstone…“I told you was ill”…LOL…)
I had episodes of numbness and tingling in my legs in my late teens then I couldn’t swallow properly after my youngest daughter was born and that lasted over a year. this was put down to anxiety, then in 1996 i was dx as ppms. makes you think.