My new MS specialist looked at the results of my recent MRI scan to see if I have SPMS. He found, “2 enhancing lesions suggestive of current inflammatory activity” Which implies a relapse rather than progression.
He went on to recommend that these lesions be treated by a 5 day course of steroids (as per protocol) followed by going back onto DMT’s.
If this is “as per protocol” why didn’t the previous, useless neurologist suggest steroids when I went to him years before with balance problems and a mobility nosedive! Perhaps if he’d treated the new symptoms as a relapse rather than progression steroids might have helped get me back on track and the worsening disability could have been avoided?
Whenever I think about this I tend to need a few moments before the steam stops exploding out of my ears and I stop screaming, “sue the bastards!” in my head!
Phew, that feels better.
Anyway, I’ve just finished a 5 day course of steroids and am only just beginning to be able to hold a thought in my head and write a coherent sentence! I’d forgotten how 500mg of Methylprednisolone a day can change you into a sleep deprived, angry, bloated mess within 24 hours!
I left work early on Friday as I thought my head was going to explode, spending the rest of the afternoon staring blankly at the wall in my living room and rocking slightly. My heart was racing and I soon figured out the only thing that took the edge off was a large glass of wine!
I crawled into bed a while later and felt like an alcoholic junkie, shaking and sweating and wishing for sleep to envelop me in her compassionate mercy. That didn’t happen though. I lay there, wide awake for most of the night, sipping water and thinking crazy thoughts till the sun came up.
The following morning was not much better. I felt like all my nerves were jangling and I had a heightened sense of awareness. The kids were getting on my nerves and I didn’t know where to put myself! We went out for a stroll around the North Laine in Brighton and I clutched onto my scooter for dear life, unable to shake the feeling of being on low grade acid in the middle of a busy, public place!
We escaped to the sanctuary of Pizza Express and 2 large glasses of wine took the edge off again! That night I didn’t sleep again so by Sunday I was a shadow of my former self and felt ever so slightly bonkers!
Now the maniacal, hallucinogenic effects have worn off I do feel better! I’ve been able to walk so much better, my foot drop has eased off and my bladder function has improved dramatically. Someone on twitter thought I was having a dramatic reaction to the steroids but perhaps the dramatic reaction will reboot my body a bit and produce dramatic improvement?
Hmmm, not holding my breath much on that one but at least I feel like something is being done to help!