Neurologist tells me I’m primary progressive, therefore no treatment, no hope!
Wheelchair bound and can only transfer with help. Asked neurologist for steroids. Said no. Steroids only work if inflammation present and as ppms has no inflammation steroids won’ t help. My GP agreed to prescribe 50 mg prednisone 14 days.
Took 50 mg on Tuesday and Wednesday . Thursday - numbness (present for 10 years) disappeared . Standing, transferring with no assistance ! Had very ‘heavy’ left arm, now normal.
Why am I improving so much when steroids don’t work for primary progressive patients?
Does it really matter; let’s hope it’s permanent in which case their diagnosis may be wrong. Even if it was SPMS steroids are no help supposedly; you just keep proving them wrong; the mind bogles.
Lovely to read this John. Fingers crossed your improvement continues.
I was on Tecfidera for a time, then twelve months later, my Neuro decided my MS was PP and not RR as first diagnosed. I asked to be allowed to remain on Tec, for which she agreed. I know it’s probably a psychological thing with me. A kind of insurance policy against a relapse/deterioration, but as she said, we don’t actually know that the DMD won’t help. All the time my blood checks allow continued use and she is willing to precsribe, I am willing to take them.
That is fantastic news John … I see a different neuro in January and am desperate to try them too … and your experience will show “what’s not to lose” … thank you
Wow from me too. Have you thought about mentioning this on the Barts MS Blog? I would be interested to know what the docs make of this. I think it can be posted anonymously.