A.J. Walker

Multiple Sclerosis etc

Appointment Assumption Nightmare

Had a bit of a nightmare yesterday. I’d been looking forward to a doctor’s appointment with the MS doctor following my diagnosis two weeks ago. I’d had the lumbar puncture a fortnight last Friday and the lab results were expected back in about two weeks. Last week I got a letter saying I had an appointment for the 23rd which fitted in with that.

I really thought it would be great to hear from the doc what the prognosis is and what the treatment options are, if any; some kind of map for the future, however sketchy.

Unfortunately when I checked the letter yesterday afternoon for the time of the meeting it dawned on me that my appointment was not today but 23rd April - and worse still, it says Thursday, which should have been a big giveaway. I was so annoyed with myself. I’d put 2 and 2 together seeing ‘
appointment,’ and '22', and knowing the LP results were due in I’d filled in the gap with ‘March’ - despite the letter clearly and unambiguously stating April and Thursday (when 22nd March is a Monday). It was a really deflating moment. As I feel I’m in a vacuum: knowing the diagnosis but not knowing what it means. Especially as the physical area of the effects have expanded. It fair took the wind out of my sails.

The subtle clues hidden in my appointment letter (doh!)

So I’ve another four and a half weeks to wait until I see the doctor. I’m sure that the meeting will be great but I’m a little bit lost in the interim. Should I be working or avoiding it? Should I be walking or doing exercises? Are there any pills I should be taking (or definitely not taking)?

I’m going to sketch out a few facts and questions now, and then I’ll try speaking to one of the MS nurses who should be able to help - and hopefully put my mind at ease. I think they aim to get back to patients within a day or two when you give them a call.

I’m going to continue my daily aim of a minimum of 8k steps while I feel it’s doing me good; for the last week I’ve averaged about 11k steps per day. And I’m hoping to get back to work soon if that is what is advised and I feel up to it.

In the meantime people, a little bit of advice: read your letters/emails/texts twice. Even put them down and go back to them later. Don’t fill in none existent blanks in your head with assumptions. As everyone needs to learn in life: ‘A
ssumption is the Mother of Fuck Up.’
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