Update 7

I am still here. I don’t have a lot to report but in a way I suppose I do. I have had the scans I mentioned in the previous update, and I have had another couple of consultations with my GP. To conclude, she cannot explain the coincidence of the antibiotic relieving the pain and as I said in my previous update the last time I took nitrofurantoin, it had no effect on the pain relief side. However she has put me forward for another ultrasound which I think this time is on my liver and is to be carried out next week.  Therefore, my next post will be after I have received the results of that, and will mark the closing of this particular goose chase. 

On a more positive side of things I have completed the pathway through pain course and I have found the meditation and breathing exercises to be extremely helpful with the pain relief. I have also recently reduced the dose another 100 mg so I am now 300 mg away from my target.

We have been living in the resting box for the past 10 weeks and in that time I have only had one really bad “relapse”.  When they happen I’m afraid meditation and deep breathing goes out of the window and the pain relief ie gabapentin doesn’t have an instant effect. I suppose I could up the dose but on the basis I am supposed to be reducing it, it seems like a game of snakes and ladders.The last really bad day I had of it was a Sunday, about six weeks ago and absolutely nothing other than distraction worked.  The CBD unquestionably is an immense relief, but if I’m in company I have learned it’s better to be distracted by them.      Temperature is still absolutely crucial to my well-being which is something I’ve known for a long time but it has never been so important. The house renovations are a wonderful diversion and it is really useful to be able to be preoccupied with light switches and drainpipes, tiles and carpets.  

I have had a couple of telephone calls from my neuro physiotherapist which were just that. She was just concerned to know what my drug habit was(!) Whether I had heard from the MS nurses and whether I wanted to see Dr Hari. I really can’t see any point in going to see him when there isn’t anything he can say to actively help me. The important thing as far as I can see is that I get another MRI done on my brain/neck to keep an eye on the lesions there In the hope I may have some new lesions and get either stem cell treatment or the ever elusive Ocrelizumab (Ocrevus).  Talking to Nicki Guck, the physiotherapist, I asked her what sort of success rate they were seeing with the application of the Ocrelizumab, and the stem cell treatment. Of both of them she emphasised that nobody was improving, and at best had steadied the physical decline of patients. With regard to HSCT, she sounded even more negative about its usefulness possibly because of the fatalities she knew about.  So do I really want to go and talk to another doctor, only to be presented with another shut door.?