Hi Poppy,
I’m sorry to hear the news about your Mum, BUT, to clear a few things up, nobody “becomes” primary progressive. At best you have not had things explained very well, and at worst you have been told something that is simply not correct.
Your Mum has either always had this type of MS, right from the start, or else she must previously have had relapsing remitting MS (RRMS), which could mean she now has secondary progressive - but not primary.
Nobody goes from RRMS to primary progressive - not unless they were misdiagnosed. Primary progressive is something you either have right from start, or never. You can’t change to it halfway through.
So definitely something up with what you’ve been told. Unless, of course, it was a typo, and you actually meant secondary?
Now assuming it’s Secondary Progressive we’re talking about, it’s important to remember it’s still very variable. Secondary progressive doesn’t necessarily mean your mum will deteriorate at a much faster rate. Secondary progressive can be very slow. It just means the person (normally) no longer has the pattern of attacks and recovery that are a feature of RRMS.
And remember, the MS has no idea what type it is. It’s just a label doctors use. Your mum doesn’t have a different disease today than she’s had for the last five years, just because doctors decide to slap a different name on it.
It’s true there are not a lot of treatments for Secondary Progressive MS (not that many for any kind of MS, come to that).
BUT, I’m confused when you say the neurologist has “no idea what’s going on”. Is he or she an MS specialist? I think you need to find out…
Because pain, visual problems and mobility problems are all incredibly common with MS, so I’m baffled that any neurologist would have “no idea”.
Or do you mean simply that he sees your mum so rarely or briefly that he never gets an insight into what’s really happening? Is she perhaps the kind of patient who plays down her problems, when asked how she’s been, so her consultant never gets a true picture?
If this is happening, perhaps you could encourage her to make a list, ahead of appointments, of things she needs to mention, so she doesn’t sit there and not tell him about any of it?
I don’t know what else to suggest, really. What’s the GP like? Has your mum ever seen/asked to see a pain specialist? And how about physio or occupational therapy?
Physio might help to some extent with both pain and mobility issues. It’s NOT a cure, but sometimes people can be taught ways to improve their muscle strength, balance etc. Occupational therapy is more about any assistive devices your mum might need, to help her get around, or do things. She should be able to access both these via the GP or MS nurse.
Is this any help?
As for answers, I guess the only answer is: “these things are part of MS”. No, there isn’t a pill you can take that will fix them all. But that doesn’t mean nothing can be done. Your mum should be getting help to lead the best life she possibly can, even though it’s not going to be MS free.
The MS nurse sounds about as much use as a piece of wet cardboard. Try the GP?
Tina
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