Hello I hope everyone is keeping well. Just a wee random question, can anyone say they can remember noticing the start of their rrms progressing to secondary? Thanks Take care
I have in the past year noticed a steady worsening. My mobility is very poor with tripping/falling becoming more frequent and balance/staggering a nightmare now. I have been rrms for 11 years. I am determined to keep trying to work but will know when things are too bad that it is time to stop. I had a telephone consultation for my annual appointment this year with my neurologist and after talking to him he has now decided he wants to see me so I donāt know if he will say it is now spms. I will let you know as soon as i have my appointment. Hope you are ok.x
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My progression was a slow shift over a couple of years, hardly noticeable to other people, but I could feel it. Then about 3 years ago it picked up a bit of pace, nothing drastic but more obvious.
It was around that time that my neuro said I was no longer RRMS but now SPMS, I think this was because I never had any obvious relapses from when I was first diagnosed, I just slowly got worse.
Today I would say Iām 75% maybe 80% worse than I was 5 years ago.
Hi
I have had a fractured pelvis thrown into the mix.
have been wondering about maybe now SP but my walking is dreadful and Iām convinced itās due to the fracture.
I ration myself to an opiate when I get into bed!
something to look forward to.
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My neuro said theres no actual test to specify MS ālevelsā, they basically look at your history since getting diagnosed.
So if you are getting obvious relapses that settle down, albeit leaving you with perhaps worse symptoms than before the relapse then I guess your still RRMS, however if you do not (like me) get sudden & obvious relapses but just see a gradual decline over time in your mobility ect then this might be classed as a shift onto SPMS.
Thats how it was explained to me ?
Just to throw a spanner into the works, my MS is now labelled Relapsing Progressive. I still have occasional relapses, from which Iāve had remission. But I have ongoing progression as well.
Then again, whatever my MS is called, there are no DMDs left for me!
Sue
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Iām still just hopelessly confused with the label thing.
Iāve read the description of these many times but Iām still not clear. Iām labeled ppms. Progressive since the start, five years ago. Now, within six months, I canāt walk at all. I had been shuffling around the house with a rollator until about a month ago.
I used to be able to get into bed without help, albeit in a rather undignified fashion! Weight bearing on my ābadā right leg and managing to get my left knee onto the mattress, then faceplant the pillow, before turning over.
Iāve not been able to do this for some weeks now. Mr Poppy has to lift my legs into the bed. Doing so in reverse in the morning and once getting me to sitting on the edge of the bed, uses a turntable gadget for me to get to standing, before being turned so I can sit in the wheelchair.
Can ppms take such a gianormous leap of progression?
Is this secondary ms ??? Whatever, Iām scared sh!tless at the results.
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Hi everyone Thanks for commenting. Iāve been diagnosed for 10 years, 9 of them on dmtās, first tysabri for 7 and now Ocrelizumab for 2. Iām going for an mri at the end of this month to check for pml, but I know thereās something going on, everything feels different and slowly getting worse. I know my neurologist will just say āyouāre on a very effective treatmentā (in a dismissive way). I had a small flare up in June due to my scheduled ocrevus in May was postponed due to the covid and I finally got the infusion at the beginning of August but nothing has improved. Not sure what to do, who to soak to or what to think. Take care x
My thoughts are with you in this unpredictable journey that is multiple sclerosis. Take care Poppy6488. Maryx
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Yeah Sue,
Iāve also had follow up letters after appointments with my neuro that say āRelapsing SPMSā ???
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Mine took a sudden leap after having massive problems with Avonex. I began having bizarre seizures and was diagnosed with epilepsy. I came off Avonex because it was poison and causing huge problems. Then very suddenly I lost my right arm and right leg and theyāve barely recovered in 8 years. Iām now classified as SPMS