RRMS to SPMS

[Redskinfan1977]

How do you know when you get to the next level?

I have had RRMS for 10 years?

[greaterexp]

I was diagnosed in 2016 after a CIS 20 years before. My neurologist is saying she believes I am transitioning to SPMS because of changes in my symptoms with no new lesions on MRIs, as well as changes in my walking speed.

Your neurologist should have a good idea based on criteria like this. My neurologist is reluctant to change my diagnosis officially due to insurance concerns.

[Redskinfan1977 in reply to greaterexp]

Thank you for your reply. I will talk with my neuro because they keep saying my old lesions are making my symptoms worse. No new lesions though.

[Royjr]

That’s a good question. I’ve been diagnosed with RRMS for over 16 years and I have asked my Neurologist that same question before. He just told me it involves a few factors like worsening of conditions without obvious relapses. I hope you get the answers you’re searching for.

I see you like the Redskins. Do you live in the DC area?

[Redskinfan1977 in reply to Royjr]

Hi. Yes. Born and raised in Maryland.

[Royjr in reply to Redskinfan1977]

That’s great. I live a few miles from Andrews AFB in Temple Hills

[SueAB]

I was diagnosed in 1988 and in 2004 my neurologist diagnosed me with SP. Even though I had no new lesions, my walking and balance had become worse.

[leking1]

My Neurologist told me I was now SPMS. I was DX with RMMS in 1982, and in 2008, with many worsening symptoms, but no new lesions, she said it was now SPMS, and sent me to a hospital for testing. They agreed.

[Redskinfan1977 in reply to leking1]

What kind of testing?

[goatgal]

I am curious as well about labels, though I am not sure if it makes any difference to anyone except neurologists and insurance companies. I have had no new lesions since my diagnosis, and no defined relapses, yet I know that I experience a slow slide. But since my age prevents insurers and neurologists from suggesting DMTs, it doesn't much matter to me if I am RR or SP. It is what it is.

[Redskinfan1977 in reply to goatgal]

I have pseudo relapses. No true relapses in about 2 -3 years now, but symptoms have been getting worse - old and new symptoms.

[goatgal in reply to Redskinfan1977]

My pseudo relapses occur very frequently, but I have had very few true (as defined) exacerbations. Even the episode that led me to self-refer to a teaching hospital lasted less than an hour, so although I have clinically diagnosed MS (lesions, oligarchic bands, etc.), almost all my exacerbations have not met the criteria for relapse. This is both highly frustrating and anger inducing because it allows almost every medical provider to respond dismissively to my symptoms. For years, I have had an observably, permanently impaired gait, foot drop, and eyesight damaged by optic neuritis, but only yesterday, (when on my own, through persistence, I finally discovered a facility focused only on gait rehabilitation), did someone suggest looking into an orthotic foot device. Sheeeesh. My current neurologist has never observed or timed my walking speed so she will never know how it has declined unless I come to see her when I am unable to walk at all.

[bxrmom in reply to goatgal]

The only neuro to time my walking speed is the one that is leaving towards the end of the year. They all have done their own little tests but the guy that I really disliked when I lived in WI was more thorough. So frustrating.

Jessie

[pamgarner]

my neuro told me,it is when your conditions get worse,ex.,my walking had worsened

[Brindisi1]

My last visit my dr told me you are so lucky no new enhancing lesions. When I asked how they could tell no new lesions not enhanced since they dont stay "lit" forever, he said it didnt matter how many lesions I had. He said they transposed the film to discover new lesions, they dont count actual #s.thank goodness Medicare only pays a fraction of the $11k bill.

Mmmm. Why did I take retail value a million dollars of DMT over 20 yrs, thought it was to keep # of lesions down? ( so many called confluence ). After explaining debilitating fatigue had not experienced when working, numbness in arms and traveling up legs , vision issues and a few other items I rather not elaborate, I asked him maybe SpMS. He said could be . Pretty nonchalant about it. End of visit. See you next yr

Dropped DMT 1 yr. ago. I also thought some hand arm issues maybe due to stenosis degenerative disc issues, he said see neuro surgeon. Since he was neurologist. Thought they could discern.

Vent groan. I guess , know -we are so complex that is why specialist.

But still breathing and functioning albeit slower and making friends with couch, but have faith. friends, family and garden/hobby

Dont think he could have done anything anyway. It is not a perfect world, yet. Looking forward to my glorified body but in the meantime putting up with its imperfections and rolling with the flow.

Thanks for vent time

PS. A new dr coming into pratice.

[RoyceNewton]

this is a good question and I have no idea the answer. I think only a Neurologist can give you an answer, apart from insurance companies I am not sure the answer is important to our every day lives, at least not to mine