RRMS to SPMS or PPMS the whole time?

[raegun67]

I have a question. I was diagnosed with RRMS in 2014. My last appointment my neuro said I'm probably in SPMS now. How do you tell? I have never had a relapse, just continuing worsening and progression of symptoms. How do you get diagnosed with a specific form of MS.

[Kenu]

Usually by the worsening of symptoms and if progression of other symptoms appear. Does not need to show up on MRI, it can just be physical. I think we all have slow progress of symptoms. I have had RRMS for twenty three years and DMT’s have differently slowed the progress. 🙏 This was how two different neurologist explained it to me years ago 👍. I am not sure that anyone has the perfect answer to that, but I think they are getting closer 🤷🏼‍♂️🙏🐾Ken

[CalfeeChick CommunityAmbassador]

I was diagnosed a mere 14 months ago, without even receiving a stage. My lesions are spinal, T2-T5. More than 20 White spots in brain that have shown no changes and no new ones. Still no stage determined, but classified MS. My symptoms have slowly increased. I'm taking "Symptomatic" medications, not MS DMT's. We've increased my initial dosages and added a couple of new meds. Still no stage. My doctor, and MS specialist at a well known MS Clinic associated with a Teaching University, says it mays take a while to determine the stage. That it is all very hard to diagnose the stages as each of us is quite unique, similar symptoms, but not quite the same. I agree with Kenu , it's a slow progression of symptoms, changes in your MRI showing new or changes in your existing lesions. Perhaps others here can explain how it was explained to them as their diagnosis' progressed. Best to you.

[Iona60 in reply to CalfeeChick]

Have they offered you a DMT?

[CalfeeChick CommunityAmbassador in reply to Iona60]

Yes, we discussed Ocrevus and Rituxan, decided to stay with the symptomatic. I am really anxious about DMT's.. I think I'm trying to stay away and hold out for Stem cell therapy.

[janetb1968]

Hi I was diagnosed in Dec last year im RRMS but it's very active and have lesions in brain and spine. I'm starting Tysabri on the 8th March hope ur ok nice to meet u xxx

[agate]

raegun67 , as others have indicated, those classifications are often a bit fuzzy and hard to determine. When I was diagnosed (1980), I had had a variety of symptoms that weren't going away for a couple of years--in other words, there was no relapsing or remitting going on. But the neuro who diagnosed me thought that the first episode might have been a very bad vertigo spell I had had 19 years earlier, followed by some other symptoms that had come along in the intervening years: some bladder problems, some stiffness, another vertigo episode, and some facial paralysis. Nobody had thought of MS at the time, and this is often what happens with people who have RRMS, as I understand it. It's only on looking back over time that they realize that a problem they had years before might have been the first RRMS episode. It might have gone unnoticed, or the person didn't seek medical help, and the symptom went away (or remitted). If you look back over your previous life, you might realize that you had some strange symptoms that went away. Bladder symptoms and even paralysis episodes can easily be chalked up to stress. That's what I had done with the symptoms I'd had over the years. I told myself they were just due to stress.

[knokkebok in reply to agate]

Hello from the UK Agate, I see a lot of similarities in your story. I am now 55, diagnosed at the age of 32. RR to start with but was changed to a more progressive form, as I explained to the neurologist that one and another must have started in my teens.

I had to do this on my own initiative as I left my 'medical past' in The Netherlands after emigrating to the UK.

I soon realized that some incidents etc in the past (weak bladder, periodic blindness in one eye, severe fatigue, losing control over my legs, etc) could be connected to MS, of which I had never really heard of before (my GP in The Netherlands just linked the complaints to stress without further investigation or referral...).

I am now officially an 'SP-er', after explaining to the neurologist that I did not think I had entered the last progressive phase, PP, just yet, as I compared myself to an acquaintance with PP, who was and still is a lot worse off than me! (and his MS was a lot more active than my 'almost dormant' MS).

Still, 'my' MS does stop me from having a normal (working) life, as the fatigue does not let me, this next to other nuisances like general clumsiness and short term memory loss etc...

I am just grateful for having a loving family around me, as a more than average number of relationships seem to break down under the pressure of an MSer in the family, when an MSer's pride (like mine..) stands in the way at times!

I wish you all the best UTC! ((.....UnderTheCircumstances..), take care.

[agate in reply to knokkebok]

knokkebok , thank you for your reply! One thing though--you mention PPMS as the "last progressive phase." Many people get confused about these classifications. PPMS isn't the last phase. MS doesn't go in phases so far as anyone has been able to figure out except that quite often those with RRMS eventually seem to have SPMS. It's called secondary because the RRMS "phase" comes first.

But when it's primary, the MS comes on without any relapses or remissions. It's progressive from the get-go.

--Except that some people seem to have PPMS but still have relapses. Sometimes they're known as "PRMS" for "progressive relapsing MS." And, just to make the situation as confusing as possible, some people with SPMS also have relapses occasionally and are put in the PRMS category as well.

In other words, these classifications are pretty loose and fuzzy, but pretty clearly PPMS isn't a phase that a person goes into after SPMS or RRMS. It's always primary. It isn't necessarily a more severe form of MS.

You are so right about pride getting in the way of letting people help. Or maybe it's just self-esteem. Having to accept help means having to acknowledge that we have MS and that it's bad enough so we could use some help. I for one don't seem to want to admit that but I've often had to.

[knokkebok in reply to agate]

Thank you for your wise words Agate, I have never looked at it like that before!

[raegun67]

Thanks, to all of you, for sharing. Prayers.