PPMS
Hi it’s hilary.
My brother has been diagnosed with ms in November last year. Very bad system here nobody taking it seriously. He has continued to degress he has slowed down his work load. Now he went to Spain to get a second opinion which now shown to have gone from remitting. And relapsing to PPMS. He was told not to take any of the meds as it won’t make the slightest difference as things that are worn cannot be fixed. He has never had a day of relapsing or remitting every day for him is worse. This is someone who used to run marathons and go regularly to the gym now has problems with his legs feeling like jelly. I want to know if anyone else has this type of MS and what if anything helps. I cannot believe that there is no treatment or solution. I would be very grateful if anyone has any advice on this.
Thank you in advance
@hilaryk0757 , there's some basic information about Primary Progressive MS (PPMS) here :- https://www.mstrust.org.uk/a-z/primary-progressive-ms and more indepth information here :- https://support.mstrust.org.uk/file/store-pdfs/Primary_Progressive_MS_2017.pdf There is a treatment, Ocrevus, which may help with PPMS. However, it's not presently available in the UK.
Hello Hilaryk0757 - it's a while since you have written. Your concern for your brother is very apparent and admirable. I don't know if you still use this site? Did Ocrevus become available? Was your brother deemed eligible for the treatment. I have been put on to it - five months ago. I too, used to run marathons. I wish you both well.