Hello. My name's Staggolee and I'm an - sorry, wrong meeting.
I'm in my late thirties and I've been seeing a neurologist for around 4 years now trying to get to the bottom of a number of issues. I've a resting tremor that started in my right hand but has recently spread to my hips, I have the most vivid dreams in which I tend to physically act out whatever's going on (including once running down two flights of stairs and through a glass table to escape a herd(?) of angry wasps - still didn't wake up, i get cramps in my fingers, toes and neck, and when I do try to sleep it's as though I'm having a fit - a bit like somebody has their finger jammed in the base of my spine and they're making my arms, legs, whole body even freak out. I'm awake through the whole experience which can last five or six hours resulting in weeks where i have practically no sleep.
I was originally told I had RLS but having spoken to other people who have RLS and describe it as 'troublesome', whereas I get downright terrified and by day 3 wish i was paralysed - extreme, I know, but lack of sleep drives you to some pretty insane places, I'm pretty certain that's not the case. Periodic limb movement disorder and over excitable peripheral nerves has been suggested but I'm not convinced.
Either way, I was prescribed .72mg of pramipexole and 1mg of clonazepam which worked fine most of the time up til about two months ago. Now it mostly works at night, but not always, and during the day I'm a shaky mess and my limbs feel like lead. I slur my words like a drunk and I could sleep for England most days. My GP has now put me on some kind of old school anti depressant that stops serotonin getting reabsorbed into the brain but I forget what it's called.
Now I've started experiencing raging vertigo as well. I'm not a neurologist, but I am a journalist/researcher which can be a pretty dangerous combination in itself. I've done my research, joined the dots and I am aware that everything I'm being prescribed is either primarily a drug to control Parkinson's or has an off-label use for the control of Parkinson's.
I next see the neurologist in April. I don't know if I should write everything down and tell him my fears or if that will make me look like a self diagnosing demic, but essentially I know my own body, I am educated, and I am sick of the "don't really know" brush off.
I've gone on too long, and potentially off at a tangent so I'll leave it there. Thanks for having me x