Loving the communication...

[LittleClapham]

We (finally) managed to get through to my GPs surgery to speak to a lovely receptionist. I am not being sarcastic here, she is nothing to do with all the mishaps. She said that my appointment had been cancelled because, to quote Hinchingbrooke's reason, 'I no longer required it'. That was news to me so she decided to phone them directly to find out why. Apparently it is because they don't have the right support available and that I will get better treatment at Addenbrooks in Cambridge.

Sort of Yaay.

I still would like to be referred to a TS clinic in London, but I am sort of hoping, it being Cambridge and all, that the neurology department there will be able to help me in the longer term. I'm not holding out too much hope but you never know, it might be a good thing. I won't find out my appointment until after Christmas *bangs head in frustration* so I hope the wait is worth it!

Also, I have been reading a book called 'alphabet kids' which I borrowed from Bedford library. It's quite interesting and *SHOCK* has a really good description of TS! It has a HUGE list of motor and vocal tics, more than most books list, and I was quite upset to discover that 3 of the tics... don't fit me... I have nearly 60+ tics according to this list... I never really thought about it before but YIKES!!! Also it turns out that a lot of the symptoms which have previously been attributed to my (now stableized) dystonia, might have actually been TS such as my foot dragging, upper limb twisting (especially confusing was the left hand twisting because my dystonia only affected my right side usually), sudden knee dropping and the massive attacks which mimicked a seizure where all of my body froze in one weird position. That's the worst one, being completely unable to move but being able to see and hear EVERYTHING which is going on around you. I remember many times hearing, 'we'd better phone an ambulance' and me inside my useless shell of a body screeching in an attempt to say 'NOOOOO!'

So anyway, that's a bit of ok news amidst all this doom and gloom. Jenifer rabbit is still sick with her nose infection... I got coated in it this morning GROSS!!! Oh well, it means I will be a good veterinary nurse!

[Hidden]

sometimes i just dont want to see doctors with Charlie as they dont know much about Tourette's. I can assure you whenever we've been to the so called wonder Hospital Great Ormond Street. They havent even bothered explaining what Tourette's is. Money for old rope comes to mind. I wish i was consultant Neurologist very cushy indeed. Five grand for a days work cant be bad work if you can get it.

[catherinem]

I know how you feel and I didn't think that such f&*! ups happened so often, I thought that I had been refered to QE in Birmingham by a neurologist at my local hospital, but I didn't find out until about 6 months down the line when I asked my GP about it. Luckily (or unluckily) I was refered by a pshyciartrist when I was rock bottom tic wise and depression wise who recognised I was out of her area of expertise. Good luck, I hope you get it sorted. xx