I hate saying 5o my neuro that something may feel better than last time because I fear 5hat they will see this as some sort of evidence that my MS is slowing down or abating.
There are several reasons for my concern:
I don’t seem to be as affected as others in clinic and, until recently, I was quite fit. I am trying to keep light (for me) exercise up as I feel that, subjectively it improves my day to day well-being. Spacticity/fatigue etc.
I fret that they somehow feel that somehow my MS is lesser and therefore not such a treatment priority as others (in my mind we are all equally affected despite external differences).
When choosing treatment they always seem to want to go easy. Frankly, I’d have stem cells, HSTC, if they’d let me. They won’t and I trust them 🙁
I try to get across that they ought to spend a fortnight in my body and see me at my worst. Not midday in clinic when I’m not yawning, can string a sentence together, and don’t crash about the house being clumsy.
Has anyone worked out a way of communicating the seriousness, the feeling that it I quite literally knawing away at you, bit by bit, without sounding like the boy who cried wolf?
This is my main frustration in the treatment environment. I wish all the medics would nivert the pyramid, as Prof Giovanni says.
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