JANUARY 2019 So what on earth will this year bring? There are so many unknowns and imponderables out there, wondering about the progression of my MS is a little diminished. And my attention is rather distracted by Miss Huffkin. But this blog is NOT about the puppy or politics. But here’s an analogy……..the direction of Brexit seems to be at an impasse. Similarly there is no treatment for my type of MS (being Primary Progressive) and the consultants can’t come up with anything sensible. So another impasse. Forgive me for repeating myself, but in case you don’t remember, or don’t want to scroll back, here’s where I’ve got to. I’ve seen 5 consultants now and they have all suggested nothing in terms of Disease Modifying Therapies. From my own research I know there is Ocrelizumab in the pipeline. And that is where it is. Not available yet and when it is available it will depend upon whether my criteria matches the NHS. Stem Cell is another possibility which is not only prohibitive in cost but not necessarily successful. More research needs to be done and also making sure I’m in the right place at the right time with the right consultant. Having said that, the fourth consultant who spoke about DMTs had plenty of warnings to give about Stem Cell. Pain Relief? Thank God for CBD resin. The infusions/injections of various drugs such as Copaxone, Tysabri, Beta Interferon, Rebif, Tecfidera and more, are not suitable for PPMS which is why there are quite a few of us out there praying that Ocrelizumab may be made available as the only drug for Primary Progressive Multiple Sclerosis. These drugs do not cure. IF they work, they may slow down the progression of the disease. By the time they’re available, it may well be not worth bothering about if I’m already in a wheelchair and unable to lift a glass or hold a knife and fork. And if I’m at that point of disability, what’s the point? I have been in touch with the drug company that manufactures Ocrelizumab and I’ll give you the low down in their words: “Currently, Ocrevus (Ocrelizumab) is not reimbursed by the NHS in the UK for PPMS and can only be accessed privately through self-payment or private medical insurance. We are working closely with NICE and NHS England to overcome the complexities that are brought about by access in PPMS. Ultimately, we would recommend that you discuss this further with your doctor or healthcare team. This ensures that decisions regarding your treatment are reviewed and assessed based on your personal medical history.    Furthermore, you may be aware that Ocrevus is licensed as a prescription only medicine (POM). This means that purchases cannot be made directly from Roche by patients or members of the public. However, should a doctor decide to prescribe Ocrevus, their respective hospital can place an order with Roche and relevant information will be provided accordingly at that point”. Oh! And you know they’ve legalised Cannabis for medical purposes. You try getting it? I have some, but there are plenty out there who can’t get it so don’t think all is what the press tell you. Ironically, physically I think I’m doing more than I was a year ago. The shock of the diagnosis rather paralysed me or any intention to do anything. Also, I was warned by quite a few people not to overdo it. Well, that’s quite simple. I can’t! But I am learning what it is that tires me most and how to pace myself. It appears that dexterity is a thing of the past. Using my fingers for, say, a jigsaw is really hard and I am using my left hand more and more. Writing is really bad. Of course we type everything now, but when doing Christmas cards, I really noticed it. But typing is not good either. But I don’t need nimble fingers to cuddle the puppy.