[Lily]

Hi everyone,

Saw my GP yesterday and he has referred me back to see the Neuro. I have escaped :lol: doing this for just over a year now but I guess that was too good to be true!

My dystonia is way worse lately and doesnt seem to want to settle like it usually does and I have a really bad intention tremor so it's back to the drawing board.

I am pleased to say though that my anti-seizure med has helped my pain immensely, so I am hoping all this flaring up has nothing to do with an increase in that I have had all this before starting the anti-seizure med so I doubt it.

I go see him in a little over two weeks. I'm gonna hide from my lupie doc in the waiting room though :lol: because he thinks I'm going great and I WAS!

love
Lily

 

[Lily]

Thanks all, I am wondering if he will try the botox injections in my neck this time, that sure would be good if it works for me, nervous as I am about having a 'new' treatment. They have had good success with them though I've heard.

Hazel the neck and my torso are currently affected along with the intention tremor in my hand there's not much of me staying still, that in itself is pretty exhausting. I guess there is a lot of pain in my neck and shoulders from the constant twisting and abnormal posture but I guess we get used to so much it's hard to even rate things sometimes.

I take a muscle relaxant at night but it's only a mild one, so maybe there's room for improvement there too. I will see what he says as far as drug interactions, I know that needs to be looked at with all the stuff I'm on.

:hug: to all who are doing it tough right now.

love
Lily