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When do they distinguish between relapsing and progressive

Hello (again)

That sounds like one hell of an appointment. How crappy. I still don’t see the point in steroids, but obviously the neurologist knows best! (Although you may be debating that point straight after such a confusing appointment!)

And now, not only does Mr Curious have no DMDs, he also essentially still has no real diagnosis!

I am sorry that after all this time the two of you are still floundering in the sea of medical nonsense. This is of course an official term.

Do keep us informed as to where you go from here.

Sue

The whole process seems to have been a farce. I know the diagnosing of MS is complex and by no means one simple test. I just feel this whole time from March with misinformation along the way is making it all worse. Our MS nurse was great in July and explained this co sultancy app would be about finalising his meds. And here we are, no idea what’s next.

Hi Carole, I’m interested in what you say here as I had 3 day IV steroids and responded well to them, in so far as I regained use of my leg, some of the pains went away and bladder function came back albeit still ‘reluctant’ …is a good response to steroids an indicator of MS? My MRI showed enhanced and non enhanced lesions on spinal cord and ‘non specific’ white matter changes in brain, and am awaiting Olicognal bands result from LP, which is back but Neuro’s secretary can’t tell me over phone, apparently I have to wait for letter.

Curious, apologies for hijacking your post!

MS nurse has been fabulous. We’ve been referred onto our preferred MS Neuro specialist. Current Neuro is still insisting on the IV steroids booked for next week. An additional MRI with contrast scheduled for end of this month. Rcieved a letter from consultant today to check we have informed DLVA as he neglected to confirm that at the appointment. He included two blood forms as he apologised for not fulfilling that at the appointment and stated that whilst this looks like PPMS “if they include the vital vertigo episode from 15 years ago we could classify RRMS and look towards DMDs”. The MS nurse has been wonderful over the phone and assured us diagnosis isn’t normally like this. They are of the opinion he doesn’t need steroids but they can’t veto the Neuro it must be my husband’s decision. Happy to hear from you Sue if you read this. Thanks all

It sounds like you and Mr C have trapped yourselves a good MS nurse. They are truly worth their weight in Lindt dark chocolate. Hang onto yours. (By which I don’t mean lock him in the cellar!)

(I always like people who agree with me!) Since your MS nurse also thinks IV steroids are pointless, in your situation, I’d say no. The reason is that a) supposing it is progressive MS, the steroids won’t help because strictly speaking, it’s not an inflammatory type; b) supposing it is RRMS, the steroids won’t work because the relapse was too long ago - ie the inflammation stage has passed.

Steroids are evil bad nasty drugs. This doesn’t mean I don’t take them when I need to. In fact, I took a 5 day course of high dose steroids last week because even though I’m officially SPMS, I seem to have had a relapse (no one ever said MS doesn’t have a sense of humour!). They aren’t nice drugs to take, they make you a bit hyper when you’re on them, and give you a come down afterwards. They leave you feeling bruised, like you’ve been brawling with a prize fighter. There are other side effects: https://www.mstrust.org.uk/a-z/steroids-methylprednisolone

I suspect that the next MRI is going to be more useful than anything.

By the way, when the neurologist said if vertigo from 15 years ago is included in the diagnosis, then the diagnosis would be classed as RR. Why in that case, doesn’t s/he err on the side of including it? And prescribe some DMDs. If that is possible, it makes sense to me that it wouldn’t be a bad thing. And DMDs could ward off relapses, if it is indeed RR.

Obviously, as always, this is my non medical opinion. I have no scientific or medical basis for my thoughts, just a bit of experience and a touch of common sense.

All the best.

Sue

Hello all, update. We’ve seen the MS specialist Neuro. He was a tad frustrated we hadn’t been offered DMT already. They’re not going to classify my husband as because of the complex nature of MS, it could be he’s PPMS. So new Neuro said they’re happy to diagnose MS and pursue interferon injections quite soon and build a case around niggly symptoms like he has recently developed a slight weakness in one hand to go along with our original issues. It finally feels like a plan in place. My husband felt listened to and better still we understood and felt informed. I do feel frustrated I’ve had to book a private appointment to see the very man we were referred to see next Jan. Even he said that referral date was ludicrous. However, no doubt one of us will be back asking pointers on the new meds when they come. But I can sign off this thread. We are aboard the MS train now but armed with a map of directions x