Hi, I was diagnosed with PPMS in January 2023 and immediately changed my diet to non gluten, diary and egg. In April I started taking Hyperbaric Oxygen therapy at the Stirling MS Therapy Centre and have been taking 2-4 dives of 50 minutes per week. My latest MRI scan has me described as ‘stable with no new activity’. I received a 6m scan as my NHS Consultant felt there was inconsistency with the previous scan (leading up to confirmed diagnosis, I will have had three scans and a lumbar puncture. I am 56 married with three daughters aged, 23, 15 and 13. I am currently able to walk but tire even after half an hour, an hour extremely tired. I experience dizziness and mobile instability. I’m aware with PPMS while the HBoT has significantly aided my mental agility, the mobility appears to be getting slightly more noticeable especially when tired. One consultant suggested possible inclusion on Ocrrevus but having been passed to the lead MS Neurologist he felt the potential side effects and the drugs success rate which he described as low, was not going to be recommended by him. I am fortunate to have Bupa medical insurance cover effective prior to my diagnosis and wondered if anyone has any knowledge or experience of Stem Cell treatment and effectiveness? I get the impression from my MS Neurologist NHS Consultant that through the NHS there is no current recommended treatment for me but at 56 with a young family and a need to work and be paid with no income protection insurance, I am wanting to slow down the progression however best I can. Any thoughts or advice very welcome please.
This facebook page should be able to answer your questions.
AFAIK AHSCT is not suitable/effective for PPMS.
Thank you & I look forward to reading through this.
Apologies for my ignorance but could you explain what AFAIK and AHSCT stand for and are you able to refer me to a treatment that may have a chance of effectiveness for PPMS. By deduction as opposed to NHS consultant recommendation and recommendation by R&RMS friends, gluten, dairy and egg free diet along with regular Hyperbaric Oxygen Therapy (HBoT) and changes in lifestyle and mindfulness would appear to have been worthwhile as well as the recent MRI result of ‘stable’. However, as the condition states it is Progressive and my aim is not to accept the ‘stable’ but ensure this is maintained for as long as possible.
AFAIK = As Far As I Know
Prof G is advocating Progressive MS to be renamed Worsening, because Progressive implies progress or improvement whereas the opposite is true.
Ocrevus (Ocrelizumab) is the only licenced DMT for PPMS. Of marginal differential effect: it doesn’t cure or halt MS, only slows it down in 70% of cases.
Alternatively try to get onto a clinical trial e.g. Octopus or one of the BTKi drugs (ending in -brutinib).
Thanks and I’m registered with the Anne Rowling Institute for Octopus, and have taken part in their Microbiom