I’ve had MS all my adult life though officially dx in 1991 with benign MS, followed by SPMS in 1996. I was effectively discharged from my neuro many years ago, which was fine by me because I was still getting annual reviews with my MS Nurse, and the option to ring if there was a new problem.
Last April, I couldn’t understand why my appt hadn’t come through, especially given that I’d fallen and torn ankle ligaments. I let it go for a while because we had a forthcoming family wedding in London, followed by an overseas holiday for my husband’s 60th birthday, followed by our annual ‘normal’ holiday with friends. During that time, my mobility has taken a nosedive with increased spasticity and pain, so two months ago I rang my MS clinic and managed to secure an appt with a new MS Nurse who referred me for physio.
Physio consisted of one single asessment then a follow up during which I was referred to a local council gym for a ‘Positive Steps’ course. I haven’t attended that yet because I’m ranting inside that the MS Nurse himself signed me off. I refuse to be thrown on the MS scrapheap at the age of 56 because I know that there are pills available to help with both spasticity and pain.
I had so many pain riddled nights last week that I bit the bullet and rang demanding an appointment with my MS Team. As a result I’m seeing the nurse and physio next Thurs. with my husband in tow for him to explain how this pain is affecting us both.
I don’t quite know my reason for posting this - maybe I need to vent, but I just hope that no-one else finds themselves in a similar situation.