Hi all. I just wondered if anyone had any positive stories of PPMS coming on quickly but pace of progression slowing, or Ocrevus stopping it? Or HSCT stopping it?
I’ve been diagnosed with RRMS and just started on Ocrevus but I am pretty sure it’s PPMS and I only haven’t been diagnosed with that because my main symptom - foot drop - has “only” been around and worsening for 8 months, and it’s supposed to be 12 months under the criteria.
Everything else seems to point to PPMS: I’m nearer 40 than 30, I have lesions in my spinal cord and brainstem but barely any in my brain. Problems passing urine, progressive weakness in my left side, now started to get jerkiness in my right leg too, and a new propensity to choke while eating or even swallowing saliva. And increasing muscle spasticity in my legs.
The only reason the first neurologists I saw gave me for it not being PPMS was because my foot drop seemed to come on quite suddenly and they said it didn’t normally happen so quickly. But they were also confident steroids would “fix” it and they didn’t, and I had new and enlarging lesions despite steroids. And it’s got gradually worse - foot now slaps as soon as I start walking and I can’t run any more. My neurologist now is just noncommittal and says he thinks it’s all part of one disease and they don’t like to diagnose PPMS if they can help it cos of reduced access to drugs.
I am terrified this means I’m going to be in a wheelchair in a few years and desperately looking for any stories that might give me hope.
As we’re all aware, there’s much more DMD treatment for RRMS than there is for progressive types of ms which is possibly why your neurologist is not in any rush to say that you have a progressive form. Have you only just been recently diagnosed @emilyb ? Recent as in the past year or so? I’ve got RRMS and have had that diagnosis since I was first diagnosed; more than 20 years ago now. Although that’s now being challenged by my ms nurse as she thinks that I might now have SPMS. I first had symptoms 32 years ago. I daren’t run anymore because I know that I would fall over; that happened 15 years or so ago and I haven’t tried running since. On the other hand I am still mobile. Still walking. Never tried or even been offered any DMD treatment. I’ve got some of the symptoms you have. More spasticity issues in my legs. The choking/swallowing issues I have had in the past but, it’s been more of an issue this past year. I honestly feel like I’m going to choke to death at times. That’s a horrible feeling. My other current symptoms are, bowel problems..needing to get to a toilet quickly. Haven’t managed it a couple of times. Also vertigo is a problem: that can happen when I’m walking or even just getting into bed at night and closing my eyes before the room starts spinning very fast. I had a MRI scan back in early July and apparently I had multiple lesions on my brain. I know that they don’t typically do a full MRI scan now and just concentrate on the brain and the neck. Wishing you well with your ms and hopefully you’ll be wheelchair free for many a year yet.
Emily; your story sounds eerily similar to mine, although I presented with foot drop when I was 36, dx with ppms at 42.
I’m 55 now, and have only needed wheelchair for past 4 years.
It’s not as bad as you fear, although I admit to being lucky that my caring for children responsibilities kind of finished when I was 48/49. Work, however, is a problem; apart from the electric wheelchair restricting movement I am paralysed down left side, so can only type one-handed and, obvs, travel and impromptu visits are a nightmare!
Best of luck; imho, it’s better all-round to embrace your disability than constantly trying to fight it..(yes, I know, easier for some than others)..
My son is not quite two and we had hoped (still hope) for another but of course the fear of my worsening disability makes that a scary prospect and I hate the idea I won’t be able to do the things I imagined doing with them.
Could I ask if you tried any DMTs or HSCT?
How quickly did things progress from the initial foot drop - and are you able to walk round the house at all now or are you in a wheelchair full time? Are things still progressing now?
Thank you. Yes foot drop started in March, MRI in May showed lesions, and LP in May confirmed bands, but they kept saying it was atypical for MS and spent a while exploring whether it could be NMO and then even lymphoma. Finally diagnosed last month after they seemingly ruled everything else out. I’ve definitely got worse since May and hoping the delay starting treatment hasn’t altered my long term prognosis too much for the worse.
Hi; haven’t tried dmt’s only one available is ocrevus but I’m too advanced for that now. Besides, from what I hear it only has marginal benefits.
I furniture walk, rollator around the house, wheelchair for trips, visits etc but first 10 years of having ppms were totally fine, my kids were aged 5-15 then..lucky!
And foot is now pretty much permanently ‘dropped’.
Just exercise as much as you can and develop your intellectual curiosity..makes all the sitting much more bearable.
Thanks very much. Really appreciate your advice. Could I ask how quickly your foot drop issues started originally / how much it evolved? You mentioned it was quite a few years til diagnosis. If I thought I could have at least a decade of relatively good health it would be a huge hope. Just worried cos doctors seemed surprised by how quickly the foot drop had come on x
None of us know how quickly things might escalate @emilyb not even your neurologist would definitely be able to tell you that. I count myself one of the fortunate ones. You might be too. Just keep an active and healthy life as best you can. You might get your ten years that you’re looking for; you might get longer. On the flip side you could get less than you would like. Wishing you all the best in getting that ten years of relatively mobile life you’re hoping for.
