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How it went.


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Hi All,

Thanks for all your kind mails yesterday. I did it, and I feel very pleased with myself, I had made my mind up to just do it.

I will now tell you a little more of what I have had to deal with over the last 4 years, as it has taken me that long to find out what is wrong with me. I only found out 6 months ago with the neurologist who sent me for the MRI scan to check my Aneurysm that I had done ten years ago, that's how they found out that I had a second one, which caused a SH during the operation.

I have what they call an illness called Blepharospam, which cause my eyelids to spasm at any given time, it comes under the heading of Dystonia, it is a not that well known.

The neurologist has been doing tests to find out what it was, so after a long time, a change of Doctor's.As they kept saying I was doing it myself, which I said was utter rubbish, so I joined another practice, who sent me straight to the Neurologist. To be honest the eyelids cause me more problems than the operation I have been through.

The good news is I have a appointment on Nov 18th to go back to the hospital where I had my operation to see another Neurologist about the eyelids, the only treatment that might help this form of illness is having injections of Botox, which will only work for awhile, so I just have to try it to see if it helps me. I was only too pleased to find out what was wrong, and I was not going nuts.

I shall be taking things easy over the next two days, just me and my dog at home together. He has certainly helped me with my recovery I am sure, he has been by my side all day, looking after me while Trev is at work.

Enjoy your days, you will get there, we all will.

Take care

Love Sonia xxxxx

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Hi Sonia, I am pleased for you that you now have a diagnosis. I find that it is easier to come to terms with things when you know what the problem is.

For me not knowing makes me feel worse.

I agree taking it easy is a perfect tonic and always helps.:-P

Good luck with the treatment. I hope they can improve your condition for you.

Enjoy your dog, :wink:

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Hi Sonia

I also have dystonia! I was diagnosed with it about 15 years ago, so nothing to do with my SAH. I think I was lucky to be diagnosed so quickly because it is rare and lots of people go a long time before they get to see the right doctor. I have it in my neck and left arm, which means I have a very shaky left hand and cannot turn my head. I have heard that botox is great for Blepharospam, but you have to keep having the jabs every few months.

There is a UK dystonia society which is quite helpful, if you think I can help in any way please get in touch.

Vivien

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Thanks for the info, Sonia. I certainly learned something from you today.

Gee, I know someone with same symptoms. Blepharospasm, especially when tired or after prolonged computer use. ... and she's been to eye doctors and had taken muscle relaxants. No one even told her what it's called...

Hope everything turns out well for you.

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