PPMS and OCREVUS
I’m wanting some advice. I started with symptoms over 2 years ago and un be known to me it was MS. I was given a lumbar puncture and had follow up scans throughout the year. In that year my walking became worse, balance and fatigue too. I got a diagnosis of PPMS in Dec 2021 but was told I didn’t meet the criteria for the infusions and they would rescan. They did last September and again although there is no evidence on the scan of progression my mobility etc is deteriorating rapidly. Has anyone else had the same happen to them. I really want the treatment to stop progression but keep hitting brick walls which is very frustrating
Yes, me. No treatment or symptom relief
Hello. Yes - I have the same - time frames sound similar. I didn't really realise what was happening in early days but I was told I wouldn't be getting Ocrevus because there was no progression or new lesions. I didn't know whether to be disappointed in receiving no treatment or relieved that there was little evidence of progression. Something like six months later I was told that a panel had reviewed my latest scans and found that there was some identifiable evidence of progression. I was added to the cohort for next Ocrevus infusion and have now had my first. Will they be taking regular scans? Can you request that a 'panel' views them. I don't know how good Ocrevus is - but I'll be hoping you get it.