Strung out on steroids …………..!

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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!

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4 thoughts on “Strung out on steroids …………..!

  1. I just started a 5 day course of prednisone last night, due to a string of exacerbations that led to my left hand being numb and clumsy for two weeks, albeit with strength and agility still in tact. So, your neuro must be onto something (or at least our neuros read from the same text books). Next step for major relapses, according to my neuro, would be the intravenous steroids. Thankfully I have avoided that thus far. Glad you survived the steroids, and hope it makes you feel better soon.

  2. Reading your tales from the steroids sounds pretty standard (apart from the sleep issue – in all my Ms days NOTHING has affected my ability to sleep like a log). I’ve only ever had IV though (my neuro preference). My heart sinks when I think of you not getting access to this in the past (or DMDs). It could have made a huge difference to you. Maybe once you start drugs you may find an improvement in things (fingers crossed). I’ve been ‘relatively’ lucky in that I moved country before my MS really kicked in and the speed that treatment happens is fabulous.. In the past if I’ve suspected a relapse, I ring neuro, if he’s not around I am told to go to a and e to see duty neuro. He does few physical tests, then bloods to check for virus, if no virus and he feels there is an issue I am hooked up to steroids on the spot within an hour or 2 of arriving. No messing, no need for MRI. I have a friend who was diagnosed less than a month ago and she is starting DMD next week. We would love to move back to Scotland but access (or lack of) to the level I have now scares me..

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