14th May 2019

Goodbye Gabapentin but……

It’s been a while since the last post and a bit of a rollercoaster but I feel enough has happened to report to you all where I’ve got to.

So, I’m off the Gabapentin.  I did it very, very slowly and carefully but it all tied in with the series of blood tests which showed the creatinine levels were back to where they should be having come off that drug.

But I couldn’t manage without some sort of relief so Amatryptaline was prescribed.  At first it was effective, but after a month I went back to the surgery and saw yet another GP with whom I had a really good discussion.  She prescribed Pregabalin which I am trying to manage as effectively as possible.   I’m on a very low dose at the moment but having to increase it.   I was rather unclear as to what drugs I can and can’t have and gather there are a range that are called “controlled drugs”.  Rather than me repeat what can be found on the internet, see here for an explanation of why drugs are controlled.  https://bnf.nice.org.uk/guidance/controlled-drugs-and-drug-dependence.html

I think this is a new directive.

I cannot describe the pain in serpent terms as it is so different.  But the difference between the pain that fights through the Amatryptaline compared with the Pregabalin is notable.  And neither are snake like.  Or eel.  “Indescribable” will do at the moment.  If the pains are spasms it’s easier for me to manage them and I can at least tell if they’re getting worse or better by timing the spasms.

Think of a red hot steel poker being thrust down inside your leg.  Or arm.  Or both.  Sometimes that is accompanied by huge pressure on my eyes, which isn’t affecting my eyesight (yet) but is jolly uncomfortable.  Sometimes there is a block of ice scratching along my skin in the opposite direction to that in which the poker is travelling.

 As a result I feel much much weaker and I have to be really careful how I pace myself.   Socialising is particularly difficult for countless reasons.  Jut so you know, I can’t really maintain a link with someone sitting beside me as I can’t turn my head after a few minutes.  Straight ahead is fine, so at least I can still play cards.  When I can hold them.  Cutting with a knife is not easy, and twirling a fork to load it with Spaghetti is challenging.  I can still do it but not for long, or much longer.  Eating is quite a challenge, and I don’t drink anymore.  Well, not for the moment.

Huffy puppy continues to delight and entertain and must be the most spoiled puppy in dogdom.  Her toy box exceeds my wardrobe and I’ve had great fun chucking out all my old clothes so that’s not difficult.  I can usually manage one simple task in the garden each day assuming the pain is under control and my muscles are compliant enough.   A big difference compared with this time last year is that I can actually feel the constraints of the symptoms now.  Sometimes I have no “give” in the ligaments or tendons or muscles at all.  As I said earlier in this blog, “Sclerosis” means hardening (from the Greek).  It feels as if the muscles, tendons and ligaments in my right limbs have no give in them at all.

On a more positive note, I had the necessary MRIs before going to see the consultant and once I have the disc and report in my possession I will go back to see the consultant in London.   In the meantime I’m thinking about the stem cell treatment, or, back to acronyms, HSCT.  Dr Kazmi and/or Dr Turner work with Dr Silber and I’m going to try and get on one of their programmes, I think at the London Bridge Hospital.  Or look at Switzerland.  I look at the criteria you have to meet and I tick all the boxes but one, so I’m not sure………..and as I’m no radiographer and don’t have the correct software to read the MRIs I’m not exactly in a position to argue why I feel HSCT would benefit me.  The box I can’t tick is whether there is evidence of inflammatory activity.  It has certainly felt like it, but the pictures may tell a different story, and indeed the one line message I have had back from UCLH states “ there is no evidence of new lesions”.   So you are now as informed as I am.

You may be aware of last weeks news about Ocrelizumab being available now.  This is the one drug that could help Primary Progressive MS sufferers.  But you have to match their (NHS) criteria.  Don’t ask me what that is as I do not know.  And neither did the MS nurse when I asked her.  But there is a glimmer of hope that I may be eligible and it’s possible it may slow things down.  As soon as I can say something informative I will post it on this blog.  And the same applies to Stem Cell Treatment.  But, you know, I’d settle for a pain free existence.  Pain is so exhausting and debilitating.

i hope my next post will be more positive and informative.  Sorry if I’m having a bleat.