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looking at your doctors notes

I though id ask to look through my doctors gp notes to see if there was any incidences that now I have been diagnoised could have been ms. I have said in the past to my neuro that ive never had anything before but ive obviously had a bad memory… the notes only go back to 2001 but very interesting. Pain and heavy arm listed in 2001, hospital visit for pain in calf 2004 and it goes on. I can only think that as it all got better and as I had 3 young children at the time I didnt ever peice anything together and promptly forgot about all of it. I wonder how many of us if we looked at our notes would read things we had not remembered. Trying to decide now if its a good thing or not to potentially have had this for 13 yrs already, at what stage to the majority go secondary progressive or is there no guidelines. Anyhow thought it was very interesting to read zoe

Hi Zoe I often wondered what had been said in my notes due to been declined life insurance 4 times :frowning: ah well As far as my ms goes though I was diagnosed very quick started with 3 really bad episodes in March 1994 and was diagnosed June 1994. (20 yrs this Friday with this dreadful disease) They do say that your more than likely to be re-catergorized to SP after about 15 years? I was 19 years before they re-catergorized mine Sue x

I wonder if some of the people who are dx’d as PPMS checked old medical records they’d find references to ‘episodes’ possibly long-forgotten which were probably due to m.s.

If that as the case it would question the dx of PPMS

This is really interesting and got me thinking

I remember about 10 years ago I went to my GP because I kept dropping things for absolutely no reason. Or I would reach for something and just totally miss.

I was only 18 at the time. I wonder how much other stuff I have forgotten about is on my records?!

Hi Zoe,

I would say it’s definitely a GOOD thing to potentially have had it much longer than your diagnosis suggests. Good as long as you’re doing relatively well, that is.

At my last consultation, my neuro conceded I may have had this over 20 years - in contrast with my diagnosis, which was only in 2010! In which case, I’m doing just great, not needing a stick yet.

I wouldn’t worry about potentially being “closer” to SPMS, because another interesting thing he said was: “If it was going to turn SPMS, it would have done so by now!”

That came as a surprise to me, as I was under the impression almost everyone with RRMS changed to SPMS eventually, and didn’t know there was any hypothetical length of time after which you could say: “It’s no longer likely…”

I’ve also (touch wood) not had what I could describe as a proper relapse since diagnosis, really - but do feel I’m getting gradually more decrepit, albeit without clear episodes. So for some time, I’ve been expecting to be told it’s SPMS now, even if it obviously isn’t a fast version.

I certainly didn’t expect to hear it’s unlikely, because it would have done it earlier!

So if you may have had MS much longer than originally supposed, I’d say it can only be a positive thing. It can’t have been horrifically aggressive, if neither you nor anybody else suspected for donkeys’ years.

I suppose there is the argument about: “Yes, but you missed the opportunity of early treatment”. Personally, I don’t feel bad I wasn’t diagnosed years earlier, and that I carried on blissfully unaware anything was wrong. I think learning sooner would have been an extra worry and a burden all those years, over something that, for most of them, has turned out to be mild.

I’m glad I didn’t know, and have never blamed anyone. If anyone should have realised, it’s me, as I was the person best placed to join all the dots. It did sometimes cross my mind I wasn’t well. But not enough to make me aggressively pursue answers, so I’m OK with that.

Tina

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