You will remember, I saw Hari Krishnan last October and left him with the hope I may be a candidate for Ocrelizumab. At his direction I had an MRI on 6th December the results of which were eventually read and reported on by the end of February. I received a letter which said “I can report that you have no new lesions”. This meant that I would not be a suitable candidate for said drug.
Through persistence, I had an appointment this morning with Hari Krishnan again and he reiterated that I was no candidate for Ocrelizumab, even if I was, the lessening in symptoms and progression would be minimal and apparently it was hardly worth taking the drug, even if I did match the criteria. Particularly bearing in mind it costs the NH £60000 per pop., and there are patients who would get more benefit than I would, so let them have it.
So I asked about stem cell and got the predicted reply. To summarise; it is unproven for MS patients and of the 15 people he has put forward for it, 2 have died. And as he verbalised this statistic he was called into an adjoining “surgery” to advise another patient who was seeing one of the MS nursing team.
“Any more questions” he said as he came back into the room and so I said that I couldn’t understand why my symptoms were so much worse and yet the MRIs weren’t showing up the hard evidence. As well as the pain (and that is a wholly different topic) the use of my right hand is severely compromised and I cannot walk far at all. This was interpreted as fatigue so a prescription for Amantadine was written. I will report on the usefulness of that when I’ve turned the piece of paper into a box of tablets. So, 40 minutes later we emerged from the hospital with a prescription to buck me up and very, very clean hands.
I reported to him that I had swapped back to the Gabapentin and the dose I was on. This current dosage is not enough so he has okayed and encouraged me to raise the dose and apparently I have plenty of slack before I reach the maximum dose. That’s not quite how I read it as I’m already two thirds of the way up the ladder to the full 3.6g.per day. Whatever………
Back on the Gabapentin the serpents are back. There are still times when they are all out on a jamboree, but I am back to recognising old friends.
Am I calling a snake a friend? On that basis Covid 19 may become my best friend.
Back on the Gabapentin and the old cast are back.
Mandi’s blog 