Forum

Secondary progressive

Help am really confused and scared! My regular neuro is on maternity leave so I saw a different neuro for my recent check-up. I didn’t warm to her at all - neither did my husband! Anyway the long and short she feels I have moved into secondary progressive ms. Alarmed I asked what this meant and was told “it’s now all downhill” I can’t believe this - I am in total shock. She also told me about 2 new drugs that may help - 1 oral & 1 intravenous. My nurse will be best to advise which one may suit me best. I am currently on interferon 3 times a week via injection. I am also struggling with anaemia. I am sorry to waffle on but am really scared about the future. My husband and I are due to see my nurse on Tuesday and I’m currently RRMS. Any help would really be appreciated. Wiggle.

Hi Wiggle,

Although not everyone with RRMS goes on to SPMS, I think this is an expected development, for most of us. It’s only a classification system medics use: don’t forget, the MS hasn’t changed since you saw her, and neither have you. IT doesn’t know what somone has decided to call it today - it’s not a living being - so don’t expect life to be a lot different, just because she’s made this pronouncement.

SPMS is not automatically a lot faster or more severe than RRMS. In fact, the more gradual decline, with few or no relapses may mean day-to-day life is MORE predictable, because you’re not as likely to wake up with something not working, that was absolutely fine last night!

“Downhill all the way” may be literally true, but I don’t think it’s a very constructive way of looking at it. In my opinion, ALL of MS is “Downhill all the way” - we can’t pretend everyone always gets completely better from relapses, can we? However, with all types of MS, the rate and extent of deterioration vary enormously. Changing the label does NOT alter how well you will do. Most RRMSers go on to SPMS, but certainly not all of them end up in a wheelchair (apologies if you already are - you don’t mention).

I already harbour suspicions I’m SPMS myself, because I think I had it for many years before diagnosis. I don’t seem to have had very many obvious relapses, apart from the big one that led to diagnosis, but still think I’m getting steadily worse. I wouldn’t be shocked or surprised to have my suspicions confirmed, but it’s still the same stupid illness, whatever they decide to call it.

On the positive side, it’s encouraging that possible treatments are being proposed, that weren’t open to you before. Might be a small glimpse of “silver lining”, perhaps?

It’s interesting that seeing someone different can open up new choices, even if you didn’t take to her much. If you’d still seen the regular neuro, perhaps you wouldn’t have been offered the chance to try something new?

Tina

x

‘Its now all downhill’ what an idiotic thing to day! Let your nurse know this was said and insist that you never want to see this Neuro again.

Hi Wiggle,I’m afraid that I cannot offer any help regarding the drugs,but if you are re-badged as Secondary you will wake up in the morning and still have WIGGLE’S VERSION OF MS.They have to label us and that dictates which drugs the drug industry can sell to the NHS for us.

In 12 years I have seen the names of the increasing number of labels constantly change and this appears to happen as new drugs appear.You are right in what you say about the nurse 'cos if you get “Fifteen minutes of fame a year” the Neurotic will probably not remember you unless you swallowed their stapler.

Does your GP know about the anaemia? It is good you are both meeting the Nurse and a rehearsal of your Double Act so you forget nothing would be good.You’re doing the best things you can,but their label changes what drugs you can have and nowt else.Oh,when it comes to waffling you have a huge amount to learn,but you’re in the very best place.

As for downhill, some of the folks on here have been doing it for that long that they’ve run out of hill, and are just bimbling along.Nobody has told me I’m not still a Climbing Instructor so I’ve done a bit of abseiling recently, but that’s just me.Secondary or whatever, the sun will rise ,even though we might not see it and you will not change to fit their badge.If the nurse upsets you,tell her to Log On here.

TTFN

Wb x <(L)>

Hi Wiggle

I’ve not got a lot to add to Tina’s excellent reply except that SPMS is as unpredictable as any other from of MS. The future is by no means certain.

’It’s now all downhill’ was an unhelpful and not strictly accurate statement. Progressive MS can and does plateau.

Anne

A big thank you to all who replied. I certainly feel better about whatever may lay ahead and certainly what my neuro said was bang out of order and caused much unnecessary stress - my husband & I will make sure my nurse is aware and hopefully help to avoid similar comments to others. Thank you all again :slight_smile: Wiggle