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Old 06-15-2009, 02:01 PM #1
rach73 rach73 is offline
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Join Date: Apr 2009
Location: Devon, United Kingdom
Posts: 531
15 yr Member
rach73 rach73 is offline
Member
 
Join Date: Apr 2009
Location: Devon, United Kingdom
Posts: 531
15 yr Member
Mad Angry....grrrrr!

Hi,

I apologise in advance for venting! I hope you enjoy!

I just thought I would review my footage of my tensilon test as I popping it in the post tomorrow. Just out of interest I watched and timed when the tensilon started to provoke a reaction to when it finished. The whole thing lasted just over 2 mins. I watched from when you can see my top lip start to move as it wasn't before and when the ptosis comes back.

I was informed at the hospital that this effect had only lasted less than a minute.

I have also spent a bit of time looking up the tensilon test this evening. ( yes you guessed it the cricket is on AGAIN!!!). From what I have read from several sites including one for UK gps is any change in weakness is a positive result and can last several minutes.

What are they playing at?

If I can find this info out why can't they? Grrrrrrr

My best mate said on the phone today Cortical Plasticity what a load of Horse **** they've fobbed you off again. I hadn't discussed it with her as I didn't want to look like I was clinging onto MG.

And another thing ( its ok Im nearly Done - and mum if you read this before I speak to you tomorrow Im fine just angry!). The mestinon I can take "if I feel better on it, as its just a stimulant...." my neuros words not mine, made the difference of me not being able to walk to being able to walk after 120mg and one hour. You may wonder as I do how I manage to maintain this consistent placebo effect? It also resolved my ptosis. Magic.

I hope you can put with me! No heel walking for me tonight. Sorry if anyone wanted a race!! LOL

Thanks I do feel a bit better now, hubbys pleased as I have been ranting all evening about it.

Love
Rach x
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