I am also one of the self-medicators previously alluded to. I take CBD paste, see previous entry, and also Biotin. That is in addition to a high dose of Vitamin D3 and Magnesium. I also follow the Swank diet and take probiotics in my diet.
I believe that we should take as much ownership of this condition as is humanly possible in an attempt to slow down the progress and alleviate as many symptoms as we can. I apologise if this sounds sanctimonious and self-righteous but I do not intend to be so, merely pragmatic. This approach could combine the use of Big Pharma medicines prescribed by our doctors, if available, intelligent self-medication, exercise and diet.
As for a care plan, I do not have one therefore any deviation is out of the question. The nearest I have is my exercise plan, devised by my excellent physiotherapist, plus the one of my own making as outlined above.
There is one prescription medicine I would like to try and that is Sativex. Regrettably, as you all know, this is not possible in England unless you are lucky enough to be part of a local trial. I did try to join one running from James Paget hospital in Gorleston, but the list had closed.
Furthermore, one of the entry criteria was that candidates had to have tried medication for neuropathic pain, such as Gabapentin, and that it had failed. In my case, the Gabapentin did work but I did not like the side effects such as weight gain and general dopiness, so to speak.
My options were to either continue with the Gabapentin or to finance an alternative. Sativex is cripplingly expensive, but CBD paste was affordable and could be funded from my PIP allowance.
Ocrelizumab is on the horizon and I would consider using it, should I qualify. If it does what it claims on the tin, and reduces progression by 24%, then why not?
This post has become rather longer than I had anticipated and I am sorry if I have induced mental paralysis amongst you. How to lighten the mood? Let me see…I could read articles in the newspaper about this country’s Brexit suicide mission or trawl the iPlayer for comic relief. It’s a tough choice.