Can't really think of an appropriate title


#1

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


#2

HI STAGGOLEE.......WELCOME TO THE FORUM, AND I AM GLAD YOU FOUND US OK razzYOU CERTAINLY HAVE HAD ENOUGH TO CONTEND WITH HAVEN'T YOU? I AM SURE YOU MUST BE FED UP TO THE BACK TEETH WITH IT ALL...AND DESPITE ALL YOUR VISITS OVER THE YEARS STILL DO NOT HAVE A PROPER DIAGNOSIS. YES I WOULD WRITE EVERYTHING DOWN BEFORE YOU SEE THE NEUROLOGIST.....IT SAVES A LOT OF TIME AND I ALWAYS FIND IF I DON'T THEN I USUALLY FORGET SOMETHING ONCE IVE COME OUT.eye roll 

DO YOU THINK YOU COULD GET AN EARLIER APPOINTMENT? TRY RINGING THE SECRETARY MAYBE? IF I AM WORRIED I RING MY NEURO NURSE AND THEY ARE VERY GOOD AND RING ME BACK USUALLY THE SAME DAY.

IF YOU WANT YOU CAN CLICK ON MY PIC OF JESS MY CAT (ABOVE) AND READ MY INTRODUCTION.

I WISH YOU WELL STAGGOLEE, PLEASE LET US KNOW HOW THINGS ARE GOING AND KEEP POSTING ON THE FORUM...WE ARE A FRIENDLY CROWD WHO ALL UNDERSTAND AND ARE HERE IF YOU NEED A CHAT.

BEST WISHES TO YOU lol

DOLLY


#3

Hi Dolly,

Thanks for that. I am going to get my next neurology appointment shifted forward and I am going to take copious amounts of notes with me. I've started keeping a diary too (note to self, took ages to get out of bed this morning despite the dog vs cat apocalypse going on around me) so this time I'm hopefully going to take control.

I'll certainly keep posting - despite my job that post was the most coherent thing I'd written all week.

best wishes right back atchya,

Staggolee.


#4

Hi Staggolee............How are you? we have been away for a little break and so i haven't been on the forum this week. I am pleased to hear that you are trying to get  your appointment brought forward and that you are keeping lots of notes as it is so easy to forget from day to day.

Do you find that it gets to the stage where you don't know if its the PD or the meds that are causing all the different symptoms? 

The feeling of being plugged into the mains i get sometimes but not others and the trembling is def worse when anxious or hungry (and i am hungry most of the time) unfortunately, it does not help with the weight, though i do plenty of exercise re dancing, it just gives me a bigger appetite!!!  ho hum eye roll

Keep smiling matey 

all good wishes....Dolly

 

 


#5

Watch out for the cat Stag, it's a killer.


#6

Would that be my old pussy you're referring to Morph ?evilshe's got her eye on you! x


#7

From here it looks like she has both eyes on me. Do I look like dinner?


#8

You certainly do ...though it looks like most of your dinner is hanging out of the dustbin  plus a few bottles!!!! your Top  cat looks well satisfied....reckon he could give my Puss a run for her moneysmile


#9

Take a seat. The cuisine in my bin is top rated garbage. If your hungry it's the best show in town.

Ch ch ch here kitty kitty.

Writing things down is definitely a good idea Stag, it's easy to get side tracked and miss out important things. My PD nurse encourages this and I always take my wife, so there is a third person perspective. Good luck in April.

Morph