Forum

a 2nd opinion

Friend been dx’d with spsms after a couple of years with what were almost certainly m.s. incidents.

He has been told he doesn’t qualify for any dmd’s as it’s spms.

Is there any point in getting another opinion from a different neuro in the hope he’d be prescribed some dmd’s or do all neuros take the view that there is no point prescribing dmds to someone with spms ?

It depends on whether he can actually put dates to relapses within the last couple of years. If he can, and a 2nd opinion is available, then yes, get that second opinion. It’s worth it because many neurologists will hedge their bets on the side of RR, just in case. And some people do go a good year or more between relapses. Personally I’d been labelled SP for a couple of years until last year having had 2 clear relapses and an MRI showing current demyelinating activity.

Sue

For the last year there has been a steady decline - no RR pattern. Does that mean that it is very unlikely that he will get any DMD’s and going for a second opinion would be pointless?

If he wants DMDs, just in case, there must be some doubt in his mind that it’s actually become progressive. If he was 100% convinced it was SP, then DMDs would do no good and he’d be taking them for no reason.

Then again, I had no relapses for about 3 years, I was convinced, as was my neurologist, that I was SP, then last year I’ve had 2 clear cut relapses with good remission, and the doctor is now applying for funding for Copaxone. I think it’s a bit of a stretch, since at the least I’m progressive relapsing (and the only DMD NICE will fund for PRMS is Extavia - which I can’t take). Plus the cut off point for DMDs is 6.5 on the EDSS, and I’m a 7. But my MS nurse seems to think he’ll get the funding, if I’m prepared to take the drug, he’ll sort it. We’ll see.

Sue

It’s the “steady decline” without relapses over the last 18 months that has convinced my consultant that I’m now SPMS.

Thinking back over the 5 or so years I dont think I’ve really had a "stand out " relapse.

As both my sister and cousin have RRMS I can sort pf gauge my MS on how theirs have acted over the years, and mine is a gradual a decline as opposed to theirs being obvious relapses and then remitting.

In the early days I did consider a 2nd opinion but now looking back I think my consultant has been spot with his diagnosis.

Having said that, I have on occasion been had letters from the clinic that say I’m (even recently) SPMS WITH RELAPSES !

I have very recently had he opportunity to go onto the Phase 3 trial - MS-STAT2 , which I have done.

Apparently the previous studies are showing that theres a chance that this drug slows down the progression of SPMS ?

Phase 3 is the final trial so fingers crossed it will have a positive outcome !

And it costs absolute pennies to manufacture, so if the final data results are positive theres a very good chance that NICE will approve it ?

Ssssue,

What will the Copaxone or Extavia do ?

Are they to stop a relapse ?

Yes, they are DMDs so their only job is to prevent relapses. It was decided about 2 and a half years ago that I was SP. This was after I’d pretty much run out of DMD options and didn’t seem to be having any relapses.

Then last year I had 2 relapses. The second one was quite a sneaky little git and affected mobility as well as sensory symptoms. I took steroids for that one and was amazed at just how well they worked (better than oral steroids had ever worked for me before).

So it’s been decided that I am Progressive Relapsing. And my neurologist is applying for Copaxone in spite of it not being funded for PRMS (a good old NICE decision) and in spite of my being 7 on the EDSS. I took it before several years ago until it seemed to stop working. So it’s a bit iffy as to whether it works, but worth a go.

We’ll see if he succeeds. And then if it works.

Sue

Hope you get it, and good luck.