PPMS

Well, a double whammy over the past 48 hours

The first, was receiving a letter from my consultant at UCHL thanking me for the information I had provided him with regarding a problem I remembered having had with my eyes back in 1986 (yes, I can remember back that far!).

After my consultation with him in the spring, I forwarded two letters that had been written by an ophthalmologist who I had seen in the summer of ‘86.   I will give you his brief communication verbatim:  “The Symptoms described are not typical of optic neuritis because both eyes were involved.  The visual evoked potentials you had with Dr X also did not show any definite signs of involvement of the optic nerves.  I think on balance it is unrelated and I classify your disease course as being primary progressive multiple sclerosis.  Good luck with the physiotherapy and I look forward to seeing you again next year.”

I was anxious to establish whether that problem I had with my eyes was possibly the start of the Relapsing Remitting type of MS because it may have altered the choice or indeed the qualification needed to allow me to try a new drug called Ocrelizumab.
And here is the second whammy.  I learned last night from the MS Society that NICE have rejected Ocrelizumab for PPMS.  If you would like to read more about this see – https://www.mstrust.org.uk/news/news-about-ms/nice-rejects-ocrelizumab-ocrevus-primary-progressive-ms-england-and-wales.

The MS Society publish numerous very helpful booklets regarding the various symptoms and problems encountered by those who have the disease.  And of course there is one on Understanding Progressive MS.  From this booklet I can tell you that Primary Progressive MS affects around 10 to 15% of people with MS.  The symptoms vary hugely – I think I have already said that in previous posts – and I take comfort from the words that there is no way to predict how fast the condition will progress.

So what can I do to slow its progress.  Think positively?  Lead as healthy a life as I can? (Diet, Exercise, Mindfulness etc.) Physiotherapy (yes, but note my comments in the earlier post) but overall – carpe diem (thank you Michael!)