rare conditions


i have a CHIARI malformation …that is a RARE condition… and having one of THOSE is a pain in the backside!

at least i have a brain

YES i have a rare condition!chiariminions

YES i know nobody else locally who has one….

so WHAT?

sometimes the things that are medically questions are unrelated to this?

life is NOT always about “pass it upwards”…

but i know now am gonna fall into the old “between stools” situation.

i LOVE my own GP…

i would not wish for any different GP.

i called into the practice –
i asked for them to increase my anti nausea medicines…

explained am having vestibular problems – both movement and eyes….and that is par for the chiarian course.

and what do they say?

i KNEW IT…i said it to the Neurosurgeon i was chatting last week in Belfast.

when you have a “rare-condition” nobody wants to make decisions on treating you.
and OBVIOUSLY they need to call my Neuro Surgeon to “ask his advice”- am sure he will be THRILLED!

so now for…

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