Yes treatments for both types of Progressive MS appear to be limited - and expensive… I wonder to what extent treatment is restricted due to lack of resources or the pharma cost?
My situation properly defined itself about 5 years ago and has most definitely been progressive ever since. Progressive? One might say logarithmic! 5 years ago I was doing 3-4 boot-camps a week, could run and walk 5 miles then it seemed as if my back gave way and I decided I needed to rest properly. It was sudden - I’ve never been able to go back. Tried Yoga with reasonable success as it maintained flexibility, but now the flexibility is fleeting and I can’t manage standing yoga, just mat work. Have put on a massive amount of weight: from a fit 89kg to an obese 125kg. The weight doesn’t help but I was lighter & fitter when everything ground to a halt, so whilst there have been secondary effects from the weight gain, I don’t tolerate being fobbed off with that being a primary cause.
For 10 years I’ve been erroneously treated for lumbar spinal stenosis (LSS) - an osteo-arthritic constricting of the spinal column causing numbness and pain. In fairness to the GP’s and consultants, my symptoms at that time were textbook, but wasn’t checked with MRI. Notably LSS is an operable condition, albeit progressive. With MS there’s no cure and now is as good as it gets…
It took an osteopath, not the massed brains of GP’s, Consultant Neurologists & Neurosurgeons, to query whether I’d had a head scan and that was Aug’20. So much time lost, so much progression The resultant MRI showed lesions and evidence of demyelination
Apart from the stiffness and lower back pain my left leg goes numb with walking. And swimming actually, so it’s not weight or impact related. Left leg goes numb and drags, foot drops so walking requires concentration, balance is poor. The distance walkable has been shortening all the time and I’m down to about 50m solo, further with a stick but after that sort of distance, a sit down will enable a partial recharge until the sits are much longer than the walks.
Like you, I’ve been prescribed baclofen for cramps/ spasms but not happy with more than 20mg/ day and often 10mg. Tried gabapentin but not sure that was doing any good and I couldn’t tolerate a normal does. Have issues with bladder / prostate and possibly bowels & swallowing coming along but still have upper body strength, eyes & brain seem to be working fine. It’s all about the pain in lower back, hips and the numbness / loss of motor control in the left leg. Right leg is fine so I can still drive but chose to go auto 2 years ago.
And tonight I ordered an electric folding wheelchair!
Yes, it would be good to compare notes