Tag Archives: Rare disease day

If you want a cat or a rare disease I can help..

So today is Rare disease day,did I miss it ? so what’s my rare condition, apart from pissed off that is, I am the only person known to have this version of what may, or may not be, hereditary spastic paraplegia. Well I saw a neurologist ,until I got a sort of diagnosis and that was that,I saw a geneticist who found out what my genetic error was and that was that.I saw someone at a bladder clinic as I have a bladder that screams ‘you need a wee’ every ten seconds,so as soon as I had a script, that was that. I was sent on a fatigue management course,which involved learning a mindfulness technique,which I already knew and practised and which doesn’t help one iota, so some private company is making a fortune, running a course that lasted 20-odd hours, to learn something of no use, that I already knew.I felt I had to attend because government rumbles at the time were saying that if you refused help you may well have your benefits sanctioned.Now I see an MS nurse yearly, who asks me a load of questions from a tick sheet, the majority of which are irrelevant to my condition,she confirms I am happy with my meds (pain meds and anti-spasm/stiffness drugs) and buggers off for another year……..
So now I see an MS nurse yearly and my GP every three years for a meds review.
I can’t walk 20 yards,I have fatigue so impressive I often wonder if it isn’t some mild form of narcolepsy, serious muscle weakening in one arm and parasthesias of epic proportions, tinnitus, an intention tremor, cramps and spasms like you wouldn’t believe and bouts of epic pain from an annoyed trigeminal nerve amongst others.Rare disease day would have completely passed me by had I not seen it mentioned on twitter.

Oh and the damned cat hat to go to the vet, it cost me £25 to find out he didn’t need any treatment.

So if you want a cat or a rare disease I really can help.

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