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So it looks like they now think I am PPMS

I always thought it was odd that my MRIs have never changed since I was first diagnosed. While I thought I had a lot of brain and a fewer number of c-spine cord lesions, the radiologist recently made a comment that the lesion distribution in the brain was minimal vs the cord. I just got a reply back from my neuro re this, "means the chances ppms rather than rrms are higher."

Not sure I am excited by this news but I guess not being on a DMT for the past 10 yrs and now starting Ocrevus is a good path???

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Great to find out what is going on so you feel better in the direction you are taking 👍 Prayers are with you and your family and wish you the best 🙏😊🐾. Ken

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I think starting a DMT is a very good path for you erash I hope that it helps you. Please keep us updated.

Jessie

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Welcome aboard! I haven’t taken any DMT’s either, it will be interesting to see how you go on with Ocrevus, blessings Jimeka 🦋 🙏

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It is very interesting and I believe you are doing what you must. Praying you feel better and this is under control quickly ...

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@erash OMG! That is exactly my situation! My new specialist said my amount of disability does not match my lesions that have stayed the same since I was diagnosed! I was starting to feel as if this was in my head. Especially when he said that! I am sorry you have progressed. I feel like I get worse every day. I will keep praying! Mine also advices Ocrevus or two others. I forget their names. All of them have a higher risk than the dmts and I have to decide which one I think I want to try.

Love to all,

Rob

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I'm sorry. Yet another reason for you to feel good about starting ocrevus. I think the MS definitions or labels just don't fit many times, and can vary from dr to dr.

Most of my lesions are spinal also, with only 6 sm brain lesions. Every ms symptom I've ever had has stayed and progressed. I had planned at my last appt with ms neuro to ask if ppms didn't describe me better then rrms but then she brought up nmosd again, which is very similar to ppms...

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Just when you think you have a handle on this MS crap somebody throws you a twist. We have to be gymnasts (ha ha) 🥨

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yes, that's for sure.

Ah well, gives us something to think about and research until our next appt...

I believe ocrevus is my best option whether rrms, ppms, or nmosd...

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Whaaat? Chances? When will you know for sure?

Yes, as Ocrevus would be your only option, you’re already right where you need to be. 🤗😘

Who would be excited about any of it 😵

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I think there is no for sure since there is overlap with diagnoses. 🤷🏻‍♀️

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?? overlap dx or maybe a clearer dx. Since ms is so very hard to dx and especially which one. I have heard that rrms and ppms are often mistaken. I know that has been my experience. I think as your time on O progresses your "true" dx will be clearer. Just my passing thoughts. ~terry

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People with progressive MS can still get relapses just less likely to get remissions and because there is little inflammation and mostly neuro degeneration, PPMS is less likely to respond to dmts or steroids. Otherwise, the McDonald criteria for diagnosis is very similar and MRI lesions are similar in appearance (PPMS lesions May be smaller than rrms and tend to have a greater distribution in the cord). At least that’s my understanding 🤓

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erash This is all so confusing for a bear of very little brain (as Pooh was termed). When I was diagnosed at 70, no DMTs were suggested because of my age. I've had no new lesions, no exacerbations, and yet my disabling symptoms are slowly progressing. I sometimes feel as if I have been set adrift on a choppy sea in a small leaky boat lacking oars or sail with no clear idea of where I will wash ashore.

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Perhaps like me, or like I assume, MS was there at an earlier age but any relapses were mild or progression was slow and disease was not recognized. So by the time of diagnosis, MS had already been present yrs earlier?

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erash Prior to MS diagnosis, there were exacerbations that were diagnosed as optic neuritis (ON) and trigeminal neuralgia. Perhaps if MS had been diagnosed in 1989 when ON struck and sent me in search of answers...but if I understand the history of treatments, few were available then...so, I don't know...would anything be different? Probably not. It is what it is. I hope very much that Ocrevus infusions stop progression for you

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Exactly! I had a odd foot drop with exercise in 1987 but a neurologist said it was paroxysmal kinesthetic blah blah blah. it went away after a few months. In 1997 I started having trigeminal neuralgia (TN) symptoms. Knowing there was an association with MS, I referred myself for a few MRIs that were negative. Then @ 2008 a bad flare of the TN resistant to treatment resulted in a hospitalization (i lost a lot of wt) and an mri loaded with lesions. And the MRIs have never changed since. And definitely in 1987 there wasn't much that I could have done differently if diagnosed with MS at that time. Yes, it is what it is.

Me too. I am realistically optimistic about the Ocrevus despite my age and despite a ??? PPMS diagnosis.

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That too was my experience. My first known relapse was in HS in 1974 that made me bedridden for two-three weeks. At that time I lived in a small farm town and the dx went undx due to lack of knowledge of ms. I now believe I may have had ms at a much earlier age, maybe even at birth. Just no way of knowing for sure. As I have gotten to know more about ms, I can look back at times in my life where I now wonder if those events were impacted by having ms. So the question becomes, was I rrms? or ppms staying dormant in me? I do know that my symptoms continued to worsen over time to the point of my dx in 2007. Perplexing to say the least. Your posts now have me scratching my head [no, not a symptom of the ms "itch"]. I appreciate your posts, thank you!

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That's exactly what happened to me 'Erash'... I was only diagnosed at the age of 40 (FYI, I am 55 now), but then realized that 'it' must have been there for much longer! One and another was not helped by the fact that I had emigrated from The Netherlands to the UK at the age of 32, and that I had to start my medical history more or less from scratch again.

As soon as I was told I started digging in my past, and my God, a lot of 'incidents' suddenly made sense! I realized then that I must have had attacks/ relapses in the past. I even think that I had my first 'attack' at the age of 11, a very painful short episode whereby the doctor had to be called out in the middle of the night.

Other problematic situations followed through the years after, like bladder problems and an originally promising school career that never was, due to fatigue and extreme concentration problems.

I also had Optic Neuritis in my early twenties, this next to a serious attack when living on my own, whereby my whole body seemed temporarily paralyzed!

What a luck at the time that my dutch GP assumed that stress was to blame for a lot of my problems (.............................................................)

My british 'adventure' was much more straight forward..... I almost collapsed after a jogging session (just to be sure - I was a smoker at the time so I actually blamed my life style for one and another), the GP 'hammered' my knee which shot up..... I was then referred to a neurologist, who diagnosed me, after an MRI, with RRMS, soon changed into the progressive kind (after I told him my life story - poor man...).

'Mine' is very slowly progressive as you can tell from my story, although I have not been able to work for the last 8-10 years, purely because of that horrendous fatigue (next to all that other shitty -'excusez le mot'- stuff).

I feel extremely lucky to have a most wonderful wife, as not all partners seem to be able to cope with a disabled person, especially not when a lot of it is hidden!

Sorry to make this story longer than planned (I was never good at 'short stories - always worried that I forget something!), I wish you all the best where possible, take care, regards Jos.

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So glad you shared your story! It’s helpful to know that a lot of us have had similar stories and share many common experiences… Not that I wish anybody else had these experiences😜

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sorry for the PPMS designator and wonderful you have not been on any DMTs. Personally, I don't think you missed much. I took a few DMTs and non really helped other than to cause pain and discomfort. It is good you are starting O and I am anxious to hear your reports about your experience. I feel it will slow down the ms progression to the point you become stable.

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Hi @erash...how strange that so many years post diagnosis there is now a kind of “oops...maybe you’ve really had PPMS not RRMS”. Ocrevus is your best bet it seems. Let us know how it goes.

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I often questioned why no changes MRI ever despite symptoms progressing, and silently questioned PPMS but you don’t ask questions you don’t want to hear the possible answers to and because my EDDS is very low, I figured “nah not me” 🤓

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I understand about not asking questions unless you are prepared to accept all possible answers. I've asked my neuro about why my MRI's have been stable yet there have been changes in my symptoms and even a new minor one. His response was that the MRI is the best tool they have but it doesn't show everything.

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Yes I’ve been told and read the same

There is Tesla 7 MRI that is more sensitive than a T 2 but it’s only available a few places

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I actually don't understand your neuro's comment at all - it doesn't make sense. There isn't a direct correlation between the number of brain vs spinal lesions which differentiates between Relapsing Remitting MS and Primary Progressive MS. Spinal lesions are more common in PPMS but that doesn't mean that only people with PPMS have spinal lesions. There are also no "rules" regarding lesions numbers and disability levels - some people have MRIs which light up like a Christmas tree yet they may have minimal disability or symptoms, while for some other people the opposite is true - very few lesions but significant disability. It also partly depends on where lesions are located. And MRIs can show what look like lesions in people who don't have MS - that is why MS is so hard to diagnose - it is a matter of ruling out other diseases first before MS can be diagnosed.

In looking at RR vs PP - it is more about whether you have relapses or not - see the first link below for the clinical definition of relapses. And many people forget (or else they just don't know) that even if someone with RRMS is not on any DMTs they can go for long periods of time without having relapses - their MS can be quite stable and show no changes on MRI. However, that doesn't necessarily mean they have PPMS - which by definition is a steady worsening of symptoms/disability without episodes which meet the clinical definition of a relapse. That is why clinical history is so important in diagnosis. Both the explanations and the graphs on the second link below might help it make sense to those who are not quite sure about the differences.

mstrust.org.uk/about-ms/ms-...

mstrust.org.uk/about-ms/wha...

erash - regardless of whether your neuro calls you RR or PP - you will at least be taking a DMT which could help control your MS. And now that Ocrevus is on the scene and approved for both RRMS and PPMS, it does mean that finally there is a drug available for those who are formally classified as PPMS - which is a lot better than when there were NO approved PPMS drugs. The hurdle some people face is being able to access it when it is not funded/subsidised for PPMS and costs umpteen thousand dollars a year for treatment - which is the scenario in the country where I live.

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Good info Frances_B

I think we (people with MS) cling to the classifications because it helps us imagine what our disease course will be and PPMS has traditionally been viewed as more severe and unresponsive to available treatments.

But the differentiation between types of MS is not black and white and my slow progression, unchanged mris and few if any relapses as well as lesion distribution do suggest a progressive form of MS.

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Yes - you're probably right about clinging to classifications as we try to provide ourselves some sort of a reference framework. The first two neuros I saw were adamant that I would not be diagnosed with MS because my symptoms and clinical history "didn't fit the pattern" - i.e. there weren't any relapses that could be identified in nearly ten years of me having worsening problems of weak and uncoordinated legs, balance problems, and bladder issues. Right up until he saw the images from my first MRI the second neuro was still saying "it won't be MS". Personally - I think they both should have known better and considered progressive MS as a possibility as neither of them was a fresh-faced baby just out of "neurology school" and both of them had around 30 years experience as neurologists.

Your comment about "PPMS has traditionally been viewed as more severe " is interesting - one of the difficulties with diagnosing PPMS is that sufficient time has to pass with worsening symptoms and no relapses or relevant MRI activity before a PP diagnosis is considered - which is where past clinical history and the "time and space" elements of the McDonald criteria are important. And I think it is the fast or slow rate of progression that is key for each person, rather than the fact of being progressive. I remember reading somewhere ages ago that some RRMS people don't actually freak out at being told they have "technically" become SPMS - that in some ways it is a relief because they no longer feel they are constantly "looking over their shoulders for the next relapse to strike them". Initially, like just about everybody, I knew almost nothing about MS and I had no option but to trust Neuro No 2's opinion, so I spent my first couple of years after diagnosis looking over my shoulder for a relapse to hit me but it never did. Once I gained some knowledge and looked back at my own clinical history I was pretty certain that I never was RRMS, and my current neuro (No 3) agrees and he refers to me as PPMS.

There was study done a few years ago in the Scandinavian countries which showed that the number of formal PPMS diagnoses had gone down, especially in the first ten years after the CRAB drugs became available for MS. Although they weren't able to show it conclusively, it was considered that a significant element of this reduction may have been due to the availability of the CRAB drugs to treat MS, and that by diagnosing people as RRMS they could be offered or put on treatments even if they were not having clear relapses - which was much simpler than having to reverse a PPMS diagnosis if a relapse did rear its ugly head. This "strategy" also covered the neuro's backside if a relapse did suddenly come along for a visit!. And this could possibly explain why Neuro No 2 would never discuss with me whether I was RR or PP and just prescribed Rebif - which was a nightmare for me with side effects that never went away until I stopped taking it.

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Good luck

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Hey erash,

Your experience is very similar to mine. No relapses or exacerbations to speak of, and no new lesions since diagnosis, but very slow and steady progression. I was diagnosed in 2006 with RRMS. I have many lesions, most in the spinal cord as well. Now, diagnosis has changed. RRMS or PPMS label doesn't change the fact that I have 'ms', it perhaps changes the approach of medically dealing with it. I was on Copaxone, then Texfidera, and now Ocrevus since February. I have seen positive changes with Ocrevus. Please keep me informed, whatever you decide to do.

Stay Strong,

Carole :-)

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Thank you Carole

Glad to hear of ur pos results thus far

U r right

The label makes little difference

It was just a psychological slap in the face to hear my neuro say what i already suspected

I’m over the momentary shock and moving on and yes, staying strong 👊😊

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erash,

Always trust your gut instincts! Easier said than done!

Stay Strong,

Carole :-D

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I tend to think that no matter how or when we get a diagnosis, it's rarely too late to begin a med which may improve our futures or delay disability. Ocrevus is showing such promise, and I'm so happy that you are able to finally get started on it.

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Hi Erash

Thank you for sharing with us your MS history that looks very similar to mine.

It seems that DMT therapy is not effective for PPMS. So I am afraid that Copaxone injections therapy that I follow the past four years will not help me.

Just one comment on OCREVUS.

As you know a patient should not receive OCREVUS if he/she has an active hepatitis B virus (HBV) infection. I suppose that before starting the therapy you had a blood test on that.

Good luck

Manos

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Yes, I’m hep b immune after mandatory vaccination (required in military and as a health care worker)

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I hope I’m not speaking out of turn but I was reading your story and saw that you had foot drop in the past. Thiamine deficiency can cause foot drop and lesions usually in brain stem maybe in spine. I’m sure you have looked at everything just thought I’d mention it good luck! I’ve wondered about MS myself mine seems to be b12

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That foot drop went away only to be replaced by anther therapy was due to a spine problem, later fixed by back surgery...but thanks!

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Gigi216, did you also have foot drop? I thought my first big relapse was B12 as my symptoms miraculously disappeared within 2–3 days of starting supplements. My neurologist said it was probably coincidence and also classified my episode as "possible MS" (or Clinically Isolated Syndrome). A couple years later I was proven wrong :( I'd say keep your vitamin levels up but also keep an eye on everything!

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Years ago yes I did. For a year my foot dragged when I walked and I had to lift it higher to not trip. I took b12 supplements and it eventually got better but I have new neurological symptoms such as dysphagia so who knows? Thanks!

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I asked my neuro doc a couple of years ago about secondary progressive. He made some statement about all MS being progressive but we just can't tell it in the earlier stages. He never said yes or no to my question. I saw Dr. Wahls last year. She has a very detailed intake questionnaire and she told me I'm in secondary progressive. I've never taken any DMTs. Not that I'm entirely against, it's just that between being JCV+ and some cardiac issues, they all seem to have potentially devastating risks for folks with those issues. The monster I know is scary enough without taking a chance on adding a monster I don't know. Just my own feeling. Everybody has to make the best decision for themselves. I've thought about Tysabri because people seem to do well on it, until they have to stop taking it and then I've read there is a big rebound effect. What to do, what to do. It's a PML risk too. So in my trepidation and indecision, I just keep looking at alternatives. I'm always looking to see what new meds might be coming down the pike and hoping for something with less side effects. I have an MRI and neuro visit on the 19th. I've had a bad summer so I'm curious to see how my MRI looks. Wishing you the best on your journey. I've read good things about people's experience with Ocrevus. Praying it helps!

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Me too. I’ve been stalling on starting a dmt but because of a more rapid recent decline, I decided it’s time to do something and now with progressive MS (sp or pp) my choice is limited. I hope ur autumn is better than ur summer 🌈

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erash, just read your post regarding your diagnosis. Yes, my neuro too diagnosed me with RR 4 years ago, but no new lesions and severe progression of disability now lead me to to believe it's PP. Got on Ocrevus last August. Let's hope for everyone's sake it works.

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