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Slightly abnormal blood tests

Nov 27, 2010 - 2 comments

I received a letter from my doctor this morning to say my recent blood tests are 'slighty' abnormal, whatever that means lol.
Letter arrived after the doctors have shut so now I'm having to wait until Monday to ring and find out results, it's going to be a long weekend ;o(
They were testing for Lyme Disease and anti GAD antibodies.
Think I need an extra large bar of chocolate tonight ;o)
Donations welcome, dark choc, white choc any type will do!
On a good note, it's snowing here and it's beginning to feel a bit like Xmas.
Suz

Mad I'm absolutely FUMING!!!!!

Nov 10, 2010 - 5 comments

Today I had an appointment with my neurologist, some of you may remember my last one sacked me because my doctor complained that it took him 5 months to get me in for a Lumbar puncture.
I saw my new neuro 3 months ago, he prescribed Keppra (it made me ill), so today I saw him for the second time and he basically told me he thought my spinal myoclonus was benign, as the Keppra didn't suit me he said I could try sodium valporate but not to make a decision today and I could get it from my doctor if I wanted to give it a go. We discussed my symptoms and how I have deteriorated in the last 4 years, he said that this was the stress of myoclonus and I should just try to learn to live with it.
He then gave me a form to hand in at reception, I did this and she said  'you've been discharged'.... well I went to the car with my husband and sat and cried, this man has basically given up on me and left me to it and didn't even tell me he was discharging me. I am at a total loss for words to describe how I'm feeling at the moment.
In my last journal I said my next journal would be more upbeat, sorry folks I can't muster a smile today.
Suz

Getting old before my time ;o(

Nov 07, 2010 - 3 comments

I'm 49 and over the last four years I've gone from being fit to being flat LOL.
I used to spend days gardening, lots of digging, grass cutting, pond cleaning and pruning. Now if I walk down to the pond to look at my goldfish I'm jiggered!
I always had pets and loved running round with my dogs, now I just have my husband and I've got to admit he's quite good at playing fetch with me now, he fetches me lunch, shopping and best of all chocolate.
I used to do aerobics now I'm walking with a stick.
This has been a gradual thing over the space of 4 years and I have taken it in my stride (so to speak). But recently I've found myself watching people in their 70's walking to the shops and thinking that it's so unfair because I can't even walk to the kitchen without my body complaining, I go snap, crackle and pop, I have wobbly legs, bad pains in my back and legs, constant buzzing in my legs 24/7 which sometimes goes right through my whole body.
I can't sit comfortably, stand without pain or sleep well due to myoclonic jerks.
My wrists snap, crackle and pop so typing, knitting etc are no fun anymore.
In all this time I've tried to stay positive but just recently I'm getting more and more frustrated. I was never one to sit around doing nothing and I'm finding it hard to come to terms with the fact that I have very little choice in the matter now.
Is this it now for the rest of my life?
Well I'm seeing neuro on Wednesday so let's hope he can find a miracle cure, if not maybe the rheumy I'm seeing in December will have the answer.
Living in hope.
Thanks for listening, it always helps to be able to come on here and have a grumble and get things off my chest.
Next journal I'll try to be more upbeat, just having a rough day today.
Take care all.
Suz



My body has given up on me hope my mind doesn't follow :o)

Sep 20, 2010 - 2 comments

I am suffering at the moment, I potted 2 houseplants last week stood up and found myself in a lot of pain. I have spent the last week resting my body, not to much avail.
I have a movement disorder which my neuro says is probably benign but my body disagrees, I have tremors in both my legs which has now travelled up my spine into my neck and arms, I suffer jerks in my back and legs when sitting and laying down and have pains in muscles I didn't know I had!
I withdrew from clonazepam, I took it at night to help me sleep and although it helped it didn't stop my constant jerking and turned me into a zombie, I decided if I was going to jerk with or without the meds, I might as well feel human.
I am not sleeping well, just lay there bouncing and jerking for hours until I finally doze off, I wake up feeling just as tired as when I went to bed.
There are many causes for spinal myoclonus, tumours and MS being just 2 of them. I have weakness in my legs to the extent that I have to use a stick to walk, I am very wobbly in my gait. I have spent the last 4 years trying to find out what is going on only to be told all MRI's, bloods, LP's etc are normal.
I hate limbo land but I love all you limbolanders out there, without you lot to rant at I think I would go insane.
Thanks for listening.
Suz