It’s 17 years since I was diagnosed which was three years after I had double vision which cleared up of its own accord after several months, I wasn’t referred to a neurologist at the time. It was another couple of years when I developed dropped foot.
What still puzzles me is if double vision was a relapse which i recovered fully from why is it PPMS and not SPMS
Labelling can be a problem for many of us. Possibly the double vision was caused by something other than MS?
If you suffered a decline from subsequent symptoms with little or no improvements then PPMS. SPMS seems to heavily dependent on an up and down set of symptoms (indicating Relapsing Remitting) and then requiring two sticks or rollator (no matter how far you can walk.
Besides our own great individuality and uniqueness our neurologists demonstrate great variability and keep inventing new labels which determine the DMTs you might be offered. The system is definitely gamed and it all leads to inconsistencies in treatment.
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I have some similarities in terms of my diagnosis process.
Had been misdiagnosed with lumbar spinal stenosis for years until a head MRI indicated MS in 2021. Trouble is, I’d had a couple of episodes in 2003 & 2008 which could have been related to MS. This was significant for a couple of reasons:
- If the episodes were connected, that might suggest SPMS, or
- If the episodes were unrelated, that would suggest PPMS.
If connected, I might not have been eligible for a DMT because the first incidents were over 10 years ago. Also, SPMS is treated in UK with Siponimod whereas PPMS is treated with Ocrelizumab. The uncertainty led to my MS team sitting on their hands for a year, to wait and see… I’d been waiting and seeing my symptoms worsen for at least 6 years at that point, so the thought of waiting some more was horrifying.
Long story short: push your MS team to rule the earlier incidents as unconnected episodes and push for treatment with ocrelizumab. Elsewhere in the world, SPMS is sometimes treated with Ocrelizumab, it’s only in the UK that licences are either/or.
Graeme
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Thank you @crd and @GCCK
All other causes for the double vision were ruled out when it occurred. I had to persist for a referral to an ophthalmologist who said it could occur spontaneously when the muscles in one eye don’t move in the same way as the other, and that as it was improving by then to leave well alone.
Neurologists since then have said it was more than likely to be MS which I’d probably had for some time when symptoms were mild.
Other than that I’ve experienced steady deterioration. When I was diagnosed the neurologist told me there was no cure and no treatment and the only thing on offer was a course of IV steroids which did nothing for my symptoms and left me constipated and unable to sleep for a week.
I’m now too old, too long diagnosed and unable to walk so not eligible for Ocrelimuzab.
Eve
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Good question. In your shoes, I would be wondering too.
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The neurologist was very keen to give me the PPMS label and was very determined to stress no cure and no treatment. I felt at the time very fobbed off, like I’d been told to go home, sit down and wait for paralysis.
I’ve seen others neurologists since then and they all say PPMS although one did say some people only ever have one relapse.
I feel like I’ve been written off, partly due to age, I was almost 50 when diagnosed, no one was interested. No support, advice or encouragement.
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