On the other hand, because it is PPMS, I get a free bus pass, which actually is worth approx £1800 per year, so it’s no small thing. If I had a diagnosis of RR and exactly the same level of disability then that’s a cost I’d have to meet myself. Because I don’t drive the bus pass is really what keeps me mobile. Otherwise it would cost me a fortune to get around, and it would mean I wouldn’t be free to hop on a bus when my legs are really giving me serious problems. (My area is cheaper for housing but public transport s very expensive. it would cost nearly £10 return to go to a hospital appointment, for example).
The trade-off for me has been:
PPMS - no disease modifying treatment, but at least I get a bus pass, which seriously helps with day-to-day living,
versus
RRMS - eligibility for disease modifying treatment (which of course has no guarantees), but no bus pass so daily life would involve more walking.
Walking makes my symptoms significantly worse. This mainly affects my legs, but also my trunk, and includes buzzing/tingling, pins & needles, burning sensations (and other altered sensations; e.g distorted temperature sensations, “phantom” sensations on the surface of my skin, water droplets which aren’t really there etc), painful “electric shock” symptoms, muscle weakness / stiffness / occasional spasms (especially in my feet - these are very painful and I have to apply a fair amount of prolonged physical pressure to move my toes out of spasm), foot drop, veering off to one side when I walk, and mild balance problems, especially when climbing stairs. Overall my symptoms are, I suppose, on the mild end of things in terms of the range of disability people experience with MS, but nonetheless very exhausting, often painful and practically debilitating because this is a daily thing for me, and far worse after walking even quite short distances.
So my bus-pass is a huge deal for me and that complicates things as I wouldn’t have got it with a diagnosis of RRMS. I think it’s really sad that a person can feel like they’d have to “pick” between being eligible for a small** amount of practical assistance and being eligible for treatment. In the end it wasn’t up to me to “pick”. The decision was made by my postcode which determined which neurologist made my diagnosis.
** The amount of assistance, i.e. my bus pass, is “small” in terms of the cost to the state/local govt. But it’s actually huge in terms of the difference it makes to my life.
I would hope there’s research going on into all the questions we have about MS. Sadly, I think one of the reasons people with PPMS get pi**ed off with their lot is that so much of the research money seems to end up looking at RRMS. The inflammatory process has a lot more payback for the drug companies, and the number of people diagnosed with RR appears to disadvantage those with PPMS. As a purely anecdotal one off, I have a friend who says he does seem to experience mini relapses even though he has PPMS. And somewhere I’ve read that this is not completely atypical (my foggy brain can’t recall where I read it!)
Sue
I have a similar experience to your friend, Sue. I feel like there is a massive variation in my symptoms at different times, which I think is why a neurologist I saw previously thought I had RRMS. But some of my symptoms have never “remitted”. They’ve just got slowly worse over time, so I’ve accepted that my current diagnosis of PPMS might be correct after all. But it is still confusing…
I’m not annoyed that so much research money goes into RRMS. Circa 90% of our MS affected community have RRMS and are generally much younger and savaged by the flares/ relapses. Luckily I have had adventures, I’ve had a trouble free (healthwise) 30+ year career which I loved. Yes I have had to stop all these things now because of creeping disability, but it is the disease that frustrates me. More progress has been made in the past 10 years apparently than ever before. Research is in progress for all types of MS (subscribe to some of the MS newsletters from various orgs and you’ll see). Ocrevus has been developed for PPMS although it s still in the very early stages. Stem cell research is also in progress. The medical profession is still trying to nail down the cause of MS. If they find it, they can then figure out how to cure it. The life I thought I would have is gone now but a different life opens up and I focus on and appreciate the positives more now than if I had carried on working too hard because that was all I had done my adult life. Thinking of what could have been would only make me sad and getting angry makes my symptoms worse. Now that would not be a good way to spend my time.
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Hi Space Monkey, can I try and put your mind at rest, your diagnosis of RRMS or PPMS is contingent on the course of how the disease affects you, not postcodes, nor your decision, nor the neurologists. Hopefully you will have been prescribed some Baclofen to help with muscle stiffness and spasms. It’s not a perfect solution but does help quite a lot. Also, hopefully you will have been put in touch with a NHS Physio who can teach you some invaluable stretches that help loosen stiff muscles. I use Ossur’s Foot Up to help my foot drop, I wear it all day, everyday. The NHS Physio should be able to provide you with one. Drink lots of water, I find that helps my muscles. Finally hopefully you have a MS Nurse. Tell them all your symptoms, they may know of some things that can relieve or at least ease your symptoms.
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Thanks Storm. I didn’t know about drinking lots of water to help muscles. That’s a simple thing I can do, so I will definitely make sure to do that.
Unfortunately going to the MS nurses isn’t something I’ve managed yet, because they’re based in a hospital in another town that’s not easy to get to by public transport. I’ve explained this to my GP and I feel like I’m making the worst possible excuses, but it really feels like a big obstacle. I have their phone number though and I did promise myself I would get in touch with the MS nurses in the New Year and stop putting off the journey because it’s “too hard”. The New Year has arrived, so I think I have to get on and keep that promise to myself.
Thanks for your encouragement. I think I’m a wee bit depressed at the moment, but it is January, so I bet a lot of people are! Anyway, I can do this.
Of course you can do this. Carpe Diem, it gets you back into some control. The MS Nurse can arrange a lot of helpful things for you. They’re there to support you along this journey none of us chose.
Thanks Storm. You’re right and it’s always good to remind ourselves to “Carpe Diem”.