Follow up to my consultation

So, I saw Dr Silber two weeks ago, and I have been ruminating over what he had to say ever since and asked more questions since the consultation.

Obviously, he cannot prove it, but he seems to think the episode I had with my eyes back in 1986 was probably the start of it and I then went through a very long period of remission.  I think that episode is called a CIS (clinically Isolated Syndrome) and I then had a very long period of remission before starting to have problems with my walking over the past 12-15 years (after around 30 minutes I was aware my right leg would not be working the same way as the left one which became a pronounced limp by, say, 2015).  It was only when the pains began to affect my sleep and mood AND the change in GP that I began to ask if someone could look into the reasons why I was having problems.  

So in retrospect, I have had  30 years of blissful ignorance and for those of you who know other people with MS and can’t understand why they seem to be “OK” bear in mind the above.

The bulk of the consultation was him thoroughly scrutinising the scans and asking the usual questions and tickling the soles of my feet etc and at the end I was able to ask about what DMT stuff I may be eligible for.  On the basis it is now Primary Progressive there is only Ocrelizumab which NICE have said they will not approve for use under the NHS or Rituximab, which I can’t comment on as it doesn’t even appear on the MS Trust website and the MS Society’s comment is “(also known as Rituxan or Mabthera) is already licensed to treat some lymphomas, and is being tested as a treatment for MS”.  It is a quarter of the price. The prices of both of these drugs are eye wateringly expensive (well, I think they are) and the scary thing is that they are not just an occasional dose, but maybe twice a year.  And there is no guarantee they are going to work – indeed may result in something terminal.  So I’m thinking that if they are under trial surely the drug company needs someone to trial them, so why don’t they foot the bill?  

So that’s my homework over the next few weeks.

Dr Silber also prescribed a hefty dose of Methylprednisolone (steroids) which, compared with the last time I took cortisone, is now taken as a hefty dose over 5 days to hopefully kick start the immune system and set it off in the right direction.  For a while.  How long?  Dunno.  When is the best time to take them, bearing in mind the adventure we are about to take?  Dunno.  No one can advise and it’s down to me to gauge possible benefits and side effects with what I’m doing.  In the meantime thank God for CBD oil.

Dr Silber suggested I reduce my dose of pain killers (Gabapentin) further, which I am dutifully doing.

So that’s where I am.  Actually I’m sitting in the chamber at 24’ of pressure and no snakes to be seen.  After last night’s shenanigans I think they’re all too tired.