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The Devil on My Shoulder

February 20th, 2019

Here We Go Again…

I have thought for some short while whether to write the following. I am generally very private and my journal is about more cheerful things. I may not publish these words  and yet they will have been written. Cathartic for me if nothing else.  Some times, some things need to be said.

I have had multiple sclerosis for 18 years and yesterday my MS decided to misbehave once more. I went for my yearly check up. I already knew my MRI showed no new lesions and I did not expect the neurologist to tell me that my titre point had doubled. As  a consequence of this change, the chance of developing PML (Progressive Multifocal Leucoencepholopaathy) has increased to a statistically significant level. PML causes death or sever disabilities. The result is that I will stop taking the drug I currently use, Tysabr. This is a wonder drug for me, it has stopped the relapses and stabilised the disease making me feel more human. I would not change but for the risk of PML. Fortunately compared to when I was first diagnosed there are other treatments available. I can try another type of infusion of Ocrelizumab which is twice yearly rather than the four weekly Tysabri. The doctor tells me it (Ocrelizumab) seems to be just as effective as Tysabri but they have no real world data as the drug is so new. I have to wait for another MRI to check there is no PML in my brain and then I will be allowed to swap in June. Between then and now I have to watch for any symptoms of PML. Being ojective you migh say it has all worked out well. I am not upset or frustrated or angry that I have to change my medication, as I have had to do that several times before. This new drug might suit me even better and the doctor said it might have some protective effects against the progressive stage of the disease. No, I am upset, frustrated and angry that once again the littl devil on my shoulder has decide to disrupt my life. Just as you think life has settled, out comes his pitchfork and prods you once again. There have been times with my MS when the little devil has been banished to the corner of the room and I made him face the wall. Still ever present, but quiet. But for the last 8 years or so he is a permanent fixture on my shoulder. The Tysabri rendered him more peaceful. Now he is laughing at me again, nudging me with his pitchfork, for his own amusement. MS is not a death sentence, but it is a life sentence, you can never escape. Most people have constant symtoms of one sort or another, some days worse than others. MS is a permanent blight on your life. You have to learn to adapt. I am resigned to these facts and to the fact that I will adapt to the new drug. BUT for the record MS and just to be clear: I am still going to live life and love life so MS, you will never win no matter what you do.

(One week later I have decided to publish this as no-one will read it anyway, but I am feeling much better and ready for the next phase of my MS. Still smiling and the little devil is again quieter. Good luck to all thos with this miserable disease, don’t let it make you miserable.)