MY TRIP TO THE NERO.

[edkor]

My neck has been a real pain. So he says What I need is a couple of shots of Botox in my neck. After getting home my neck is better but my dizziness is now worse than before. What I would like to know is anyone have a story to tell bout what happened to them? Also my sinemet was reduced and told to keep taking the coQ10. then I must let him know how Im doing.

[Hidden]

I am so pleased for you that your neuro is keeping a check on you and seems to understand the needs you have. Mum's neuro was of the vein that she had what she had and that was that, there was no follow up or checking once he prescribed her medication and our lovely GP was the one that chased things up and got things running in an orderly fashion, The only appointments we could get with the neuro were more than 6 months apart and of course mum was ill each time one came up.Once with a gastric infection and once with Shingles.It later transpired we could have an in house visit but nobody had told us this at the time! I would let him know that your dizziness is worse as he may be able to help you further. Your GP would be able to ring him direct for advice too.

[cabbagecottage in reply to Hidden]

We have had the same situation as far as the consultant is concerned . Would say you are doing ok come back in five months . I have my fingers crossed to in the Hope that a Parkinson's nurse is giving us a home visit . Been trying to get one for six years . Will let you know what transpires.

Maybe she will have a different picture seeing him in his own home . At least now I will have a contact No if I have any issues . Maybe even she will try a different medication what's to lose !!!

She has already Contacted continence nurse OTs and others for me over the telephone , got things moving for us . Hope this new broom will sweep cleaner for us .

[Hidden in reply to cabbagecottage]

our Parkinson's nurse appeared early on and it transpired she was the neuro's ears and eyes. It did mean that as soon as I said can we have the hospice visit it came immediately. But other than that (I suppose because we were switched on and being advised by PSP), we had already covered the things she could do for us so she mainly did a lot of hand holding and sympathy!

[jimandsharynp]

Ed, reducing the Sinemet is probably either because it isn't working or to find out if it is working. Often PSP patients either don't respond to Sinemet or respond but only for a short length of time. Since Sinemet has terrible side effects if you use it a long time it is good to get off it if it's not working. Long term use can cause Dyskinsia (irregular movement of the body) movements like Micheal J Fox has when not on Sinemet. The drug can actually cause what is not an issue for most with PSP (Dyskinesia). Spelling can be wrong for Dyskinesia. Good luck. Also our neurologist at the university said there are some reports that coQ10 is helpful with mobility in PSP so give it a try and see if you notice a difference. I'd take it step by step. Get off Sinemet before starting coQ10 so you can see what effect both are having. Just my thoughts as a non-medical professional.

Jimbo

[edkor in reply to jimandsharynp]

Thanks for your input. I still feel lousy . I feel its only going to get worse.