I’m 59 and was diagnosed 8 years ago. Haven’t seen a neuro for 6 years. Always assumed I’m primary, progressive. My GP prescribed Prednisolon for a two week course. Almost a cure ! Okay for 6 months but now rubbish again. Am I, therefore, relapsing remitting ? Should I see a neuro, take more steroids and try a dmd to maintain the steroid benefit ? (I know it won’t be that simple !). John
Steroids ! iPad typo !
i agree with jen, get a referral back to neuro.
ask what flavour of ms you have. if you responded well to steroids maybe RRMS.
anyway it seems amiss that you dont know what type you are.
whatever the outcome. stay well and enjoy christmas
love carole x
But didn’t you recently use Fampyra, and had a very positive response to it, which you posted about not too long ago??
Now, I was under the impression that this medication was:-
a) Only suitable for people with progressive forms of MS (,one of the very few medications for SPMS or PPMS)
b) Only to be prescribed by a Neuro.
I’m afraid your original post has therefore confused me, and would very much appreciate your clarification
Hi Dom Fampyra may be useful in any form of ms. It can be prescribed by any doctor, if he/she wants to. My GP provides a private prescrtion. If you take a look at the Thisisms website forum you will find that many RR patients are taking Fampyra. I have had, and still have, a positive response to Fampyra. Although I’m currently In a downturn, it doesn’t mean Fampyra isn’t helping. John H
Prompted by Dom, I notice you did post some very similar questions back in Summer. I don’t think there’s a lot to add to what was said back then. There is no reason to think a positive response to steroids would prove it couldn’t be PPMS, but the difficulty being that it would be unsafe to prescribe steroids continuously at that level. That’s why they are only usually prescribed for the acute exacerbations of RRMS, as the patient doesn’t need to stay on them permanently to preserve the benefit. They might produce benefits for PPMS, but if it’s unrealistic to stay on them long-term, they will do no more than provide temporary relief, as you have found. You might think: “Well, temporary relief of a few months now and then would be better than nothing”, but there’s a limit to how often you can be prescribed steroids without other health risks.
I do think it’s extremely unlikely you have really been RRMS all these years, and that nobody (inluding you) has picked up on this. You surely must know whether you have distinct episodes or not?
However, I do think it’s strange that you don’t have a neuro, and that you say you have never really had a formal diagnosis of PPMS, only an “assumption”. I would pursue both these things with your GP: “What is your diagnosis exactly, and why don’t you/can’t you have a neuro?”
I’m afraid there is some onus on the patient to raise these things, because my general experience is if you don’t ask, you don’t get. If you haven’t complained about not seeing a neuro for six years, the assumption is probably that you’re happy with things as they are. Why would they make work for themselves, by suggesting you come in, when you have not asked for it?
After eight years, it may well not even be the same neuro you saw when you were first diagnosed, so it could be that they have quite different ideas, and you’ll get more concrete answers.
Tina Thanks for your informed comment. I last saw a neuro two years after diagnosis. All he said was ‘I suppose you will be having good days and bad days. No real point in seeing you again’. I, therefore, assumed I was primary progressive. The following year I had a dreadful downturn which lasted six months before I recovered . Relapse? Another assumption - I have often read, on this forum , that steroids have no effect on primary progressive people . It was only by chance that I was prescribed steroids six months ago. I told my GP that I thought that It felt as if I’d had a kind of ‘bug’ for months. He then suggested steroids. Almost all my ms symptoms disappeared within a couple days. Anyway, I’m going to take another course of steroids this week and if they work again I’ll see a neuro soon. John H
I agree about the steroid and RRMS connection. I think an improvement that lasted six months showed you were having a relapse that was halted by the steroids. My neuro prescribed me steroids and when I saw an improvement he put me on Fampyra - I think because he thought this showed I was RRMS. But the doctors will not put you on steroids permanently.