As the title says, new to this forum, but not so new to my diagnosis. I am between treatments now as I go from RRMS to SPMS. For many years I thought that I must have been misdiagnosed, but alas, recent events sorted out that idea. I was diagnosed in 1997, enjoyed years of cycling and walking in some fantastic places until in 2019 it came to an end with my biggest flare up in years which cost my job, forced a relocation and for the first time prompted my doctors to put me on some medication - 22 years after original diagnosis. hey ho, better later than never but what do I know. 2021: My neurologist says enough of those drugs, seems no fit for purpose now as symptoms are bad, time to change and one month ago stopped taking anything. For now. New drugs are looking very promising as I proceed down my path to SPMS. (It has to be said I have seen this coming for a couple of years now. Still, 20 years of fantastic health grand!)
Hi Gareth,
Welcome to the gang.
Similar to you, symptoms since 1989, diagnosed in 1998 but many years when I symptoms didn’t interfere with my life. 10 years ago changed to SPMS. I started the downhill path. Now use a walker or scooter.
Like you, I’m so glad I had such a good time before my disability hit me.
Not sure why you’re not on any medication now. I’m on lots for spasticity.
Stay positive, keep well.
Jen
Welcome
Great attitude! So sorry about that last flare up and your job. Did they determine the SPMS by the flare up, MRI or just sudden progression?
Hi Jen,
Thank you for your message. I had great years wandering around hills around many places near and far, met many people and am so glad that I did. Disability first hit my cognition - work colleagues couldn’t make head nor tail of what I was saying. That was 2018 when life went pear shaped. But like you, I now use a walker and a wheelchair. I was on Tecfidera for about two years until end of April. My symptoms had been getting worse and worse from enjoying cycling and walking until late last year. Now I can barely walk two steps unaided - depending on time of day. A cold shower to start the day gives me better walking for a short while. But I miss hot showers! As far as meds are concerned, my neurologist told me to stop taking the Tecfidera there and then and would start me on siponimod in 6 months time. On the bright side, the MRI showed no new lesions in the last year, so 6 months no meds? It’ll be fine,need to try and get any exercise I can.
Thanks Jacyp
The flare ups all get a bit confusing - when is an exacerbation a flare up and vice versa. But for the last 18 months they were getting more frequent, and one ‘stand-in’ neurologist told me I had gone straight from RRMS to PPMS. That was upsetting, then my normal guy came back, spent some time with me and another MRI, confirmed no new lesions but said given all the symptoms in the last 18 months an my current level of (dis)ability, there is clear progression into SPMS (which was not really unexpected and I had mentioned the possibility a number of time in the last year).
Thank you for your details. I too, feel I have gone to Secondary, but luckily my symptoms are slow going. I have a facial nerve issue that is causing a slight eye lid delay in closing. Occurs mostly when I am very stressed. And of course the ongoing muscle spasms in my legs and the quick body jerks have gotten worse. Take care of yourself! As we all should… 