Do l have RRMS or PPMS

l have just been diagnosed with MS, lesions in spine and brain and see a neurologist tommorrow. One doctor at the hospital said l have RRMS, relapsing MS because l had a great response to the steroid treatment, it felt like l was totally cured, he said if l had progressive MS l would not have had a great response to the steroids. THe other doctor said he thinks l have PPMS progressive MS because my symptoms started with walking difficulties 6 months ago and walking kept getting worse over the last 6 months, apart from walking theres no other problems

Putting labels onto MS is always difficult. The fact you made a recovery very much puts you in the relapsing remitting camp.
There are lots of subdivisions within RRMS that are used to determine which treatments you will be offered.
Not entirely sure whether spinal lesion are more common with Primary Progressive MS. Statistically PPMS has as many men as women afflicted and usually has a later onset.
Put two Neurologists in a room and you will receive 3 diagnoses.
A diagnosis of RRMS offers more treatment options.

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I never had any relapses, so pretty clear it was PPMS for me. Hopefully, you get the clarity you need soon and advice on treatment options.

Just paraphrasing what the others have said:

With PPMS, you don’t get better. Ever. You might have good days and bad days but the trend is always downwards.

There is just one treatment for PPMS currently licensed, named Ocrelizumab, but it only claims to reduce the rate of decline in around 70% of cases. There are some new meds known as BTK inhibitors which are nearing conclusion of phase 3 trials, so expect them to be licenced in the next couple of years, but they don’t claim a cure or a halt to progression either. They provide a treatment with easier dispensing (tablets) and fewer side effects than ocrelizumab.

RRMS by contrast is an on or off proposition, at least in the early stages. For many, they can lead completely normal lives for decades during their remission phases, though the relapses do tend to become more frequent, more serious and with the reset becoming less complete each time, so tending towards progression.

Sorry, it’s not a cheerful prognosis. Like you, my walking has deteriorated significantly though I am also beset by fatigue and bladder urgency too.
Graeme

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Hi there. I know you want answers as soon as possible but it’s probably best to see what the neurologist says.

To be honest and I don’t know what others think , I am slightly surprised that hospital Drs are putting forward their (differing) views. I thought that diagnosis should be given by a neurologist

l see a neurologist today and he will tell me what type l have, lm pity sure its PPMS because lm a male 51 years old and it started 6 months ago with walking problems that kept getting worse, one doctor said she thinks it RRMS because the steroids had a great effect making me walk almost normally again , atleast short term, she said steroids dont work well on PPMS so she said she thinks its RRMS, but shes probably wrong, l will find out for sure today when l ee the neurolgist for the first time, if its PPMS l hope the neurologist lets me take OCREVUS

Good luck with the diagnosis :+1:

When you receive an ocrelizumab infusion, they give you a pre-med dose of Methylprednisolone, a corticosteroid steroid and you feel great for 3 days :grin: … until it wears off.

So the Neuro’s comment about steroids & PPMS is puzzling. In the simplest terms you’ve gone from “normal” to something continuous, which suggests PPMS.

yes l think its PPMS l have unfortunately , anyway l will let you all know in a day after l see the neurologist to confirm it, just praying he lets me have OCREVUS, if he says no l will see another neurologist to see if he lets me

JUSt to update l just saw my neurologist today for the first time and he said his 95% sure l have RRMS not PPMS, l was sure l had PPMS because the doctor at the hospital who diagnosed me said thats what l have, but he wasnt a neurologist . If a trained experienced neurologist says its RRMS then should l assume his correct. He said l have a choice of two treatment drugs TYSABRI once a month or OCREVUS every 6 months. He said both are good but TSABRI is the better choice as it would be slighly more effective

Excellent - well excellent that you have got a proper diagnosis by a neurologist. As before I’m surprised that non - neurologists were giving their opinions and causing anxiety in the process. The neurologist will have the expertise and experience of MS diagnosis.

Ocrelizumab (Ocrevus) is administered to RRMS and PPMS, so if your neurologist is giving you the option of meds, take the only one which is offered to PPMS. That way you cover both bases!

yes l see what you mean about how l cover both bases with ocrevus but the neurologist said TSabri is slighlty more effective and will work faster then ocrevus for RRMS he said 95% sure l got RRMS maining because he said the steroid treament wouldnt have been so effective for me if l had PPMS, when l went to hospital l needed a walking frame and after the steroid treatment l could almost run. l guess if his wrong and l have PPMS would Tsabri not work at all on PPMS?
so l guess l am taking a risk if l go with Tsabri. lm not sure what to do.

So one Dr and the neurologist ( someone experienced in neurological conditions) have said it’s RRMS.

So do you know what the other Dr specialises in. Is it anything connected with Neurology or autoimmune conditions?

For the immediate and longer term you will be a patient of the Neurologist who will monitor the development of your MS and if required will change your DMT

l just spoke to a MS nurse from a MS organisation and she said my neurologist is a very good and experienced one and he would not be wrong if he said l have RRMS and she said she agress with him that Tysabri would be more effective then ocrevus, so l will go with Tysabri and l guess if its not effective l can switch to ocrevus

It’s a paradox…

MS diagnosis is based on lesions on MRI and/or lumbar puncture.
There isn’t a test to distinguish between MS flavours.
They’ll look at history to make a call if RR- or Progressive. Then they’ll “wait & see” which can seem neglectful at times. They’ll want to see what happens next.

For me (no expert!), what you’ve described sounds like PP. You’re 50’s, not younger and from initial sensations it has worsened progressively over the last 6 months. I’m PP- so not an expert on RR- but folks talk about a flare with RR- which then goes away again. Relapse-Remitting. You’ve not remitted - yet.

If consultant is right about RR- then the symptoms will go away again once on a DMT. If not then it’s PP-. Tsabri won’t be effective against PP-, Ocrelizumab will be effective against either but perhaps to varying degrees. Latest wisdom suggests hitting disease as hard as possible as early as possible, rather than building up with stronger & stronger meds (as was earlier practise). Some with RR- can find relapses effectively halted with the right meds but most find effects moderated rather than suspended. With PP- it only gets worse :frowning_face: - just a question of how slowly.

Is there anything that you’ve missed in your account? Perhaps some unexplained events months or years ago? Such things could skew an opinion towards RR. However, I have a history of chronic lower back pain & sciatica which was masking MS - I was first diagnosed SP- rather than PP- but then over next year they dismissed the earlier stuff as spurious. And I still have the back pain!! As everyone will tell you, MS is very hard to diagnose, but don’t get fobbed off.

thanks, yes lm 51 male, it started with walking problems 6 months ago , legs felt weak and off balance, that got worse but past few months it stayed about the same until l had a few days where it suddenly became almost impossible to walk and l went to hospital , did a mri scan showed MS then 5 day IV of steroids and that felt like a miracle cure , went from walking frame to running and now walking almost normally after the steroids. l would say l am now walking about 70% or 80% like normal but not totally normal . The neurologist said his 95%sure RRMS because the 3 days where walking got much worse was an MS attack and he said l wouldnt have responded so well to steroids if it was progressive . Both my neuologist and my MS nurse from an MS organisation say lm better off taking Tysabri rather then ocrevis as it will be more effective , so if l choose Ocrevus l am going against their advice, But my fear is as you said it could be progressive and Tysabri wont be effective like Ocrevis, so l would sort of be a guneia pig on Tysabri , where they just wait and see if it gets worse and then they will say, "sorry we were wrong its progressive, now switch to OCverus "after the damage is done, anyway l have a week to decide. My MS nurse did say Tysabri would still work on me even if its progressive because l have inflammation and the steroids worked, but l dont know if thats correct, Are you sure if its progressive Tysabri will not have any effect agaisnt the MS. If l choose Ocrevus l am covered for both PPMS and RRMS but l will be going agasint the advice of my MS nurse and neurgoligst , and it wont be as effective agaisnt RRMS as Tysabri would be, so its a hard choice

Hi
I believe you can go on tysabri then if needs be transfer to ocrevus but you can’t go from ocrevus to tysabri, I think that’s right from what I’ve read elsewhere, I’ve just had my second tysabri injection this morning, if you read up it’s a highly effective dmt but like all dmts has its risks

Personally, and as a final comment for me, if it was me I would forget about Primary Progressive . That idea seems to have come from a Dr who so far as you know (?) isn’t qualified to make such diagnoses - is he / she a neurologist or autoimmune specialist , have any experience at all in the diagnosis of MS?

The fact that you have recovered most but not all of your walking ability sounds to me like classic Relapsing - no one gets 100% recovery from damage caused in a relapse . Recovery yes but not 100%

Thanks Hank Dogs, yes l was worried l had PPMS and thought l did , until the neuologist said its RRMS, but l guess theres probably lots of people with RRMS that are in worse shape then those with PPMS, my MRI said l have lots of Lesions in the brain and spine, l think they said more then 20, but l guess lm lucky its only the legs that has been affected so far , nothing else. They said Tysabri has a faster impact and more effective on RRMS then ocrevus, so thats the best choice