I have SPMS too, non-relapsing, which means there are no DMDs for it, as you know. There’s only Mayzent (siponimod) for relapsing SPMS (link below). There’s one DMD for PPMS, but not a single one for non-relapsing SPMS..!
If the WHO are only now approving Copaxone, then they’re really behind the times, as it was one of the first DMDs when it was part of what was then known as the “ABCs”.
I’m like John, I haven’t seen my neuro in years. My neuro (an MS researcher and now a Prof) was private and excellent, but he’s an hour’s drive away (or in London) and I developed some kind of symptom or other that kept me at home each time I thought I’d go and see him, so I never got round to seeing him again - although I suppose the only reason I’d see him is to keep him up to date on how I was doing or in the forlorn hope he might have some suggestions for some of my increased symptoms.
I once saw the local NHS MS neuro when I was trying to get DX’d many years ago and didn’t like him at all, so never went to him again. In the past year or so, I asked my GP if there was maybe another neuro, and all she could do was shrug her shoulders as if to say “too bad!” and opened the door for me to leave as it was the end of my appointment, so a fat lot of use that was.
I haven’t even had contact with my MS nurse for years either, as I’m not sure what else she can do for me either.
When you’re told there’s nothing for you other than the standard drugs for treatments (things like Baclofen, etc), you kind of lose interest and become cynical, as John said, and you just try to live your life as best as you can.
As a woman who had a total hysterectomy in my early-mid 40s, I’ve been on HRT for over 20 years since a year or so before the hysterectomy. I’ve insisted on remaining on it (oestrogen only), much to the horror of my GP until more recently when it became known to be safer, as it’s possibly neuroprotective in MS. Prof Giovannoni did an article a few years ago about HRT (link below), where he said, “There is compelling data that HRT is anti-ageing and many animal studies showing that oestrogens are neuroprotective.” In the comments, a number of women say how HRT seems to have slowed their progression.
Some other things are said to be neuroprotective, which may help even if only slightly.
- Vitamin D is supposed to be neuroprotective, and I take that too.
- Believe it or not, nicotine is too. I finally managed to quit smoking thanks to e-cigs 14 or 15 years ago (I was a very early adopter!) and I continue to vape.
- LDN may also be neuroprotective, and I continue to take that also although I’ve no idea these days if it otherwise helps of not, having taken it since my DX.
There’s probably more, but I can’t think of them or don’t know what they are.
I may be just lucky, but my MS is not as bad as many people’s. My progression has been very slow (touch wood!), although stress and anxiety in recent years may have made me more fatigued than ever and affected my mobility in that time, eg: I’m thinking of having a stair lift installed for going downstairs (going upstairs is still OK-ish). Is it because some people with SPMS don’t progress that much if at all, or is it due to luck or to the various things I take, like HRT and LDN, who knows.
Unlike John, I’ve well and truly waffled on, as I often have a tendency to do. I’m sorry if none of this helps answer your question, though.
Prof G on HRT:
Is it MS or is it the menopause?
GAVINGIOVANNONI.SUBSTACK.COM
Dealing with menopause is hard enough without having MS. In this Newsletter Prof G goes through the pros and cons of HRT (hormone replacement therapy) for managing menopause in...
If you’re relapsing SPMS, and if you haven’t read about it already, there’s some info on Mayzent here:
Mayzent (siponimod)
MSTRUST.ORG.UK
Mayzent (siponimod) is disease modifying drug treatment for people with secondary progressive MS who have relapses or signs of MS activity on MRI scans. You take Mayzent as a pill...
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