Queen of Sleep

Living with narcolepsy: a personal journey

Primary Care Trust – Sodium Oxybate

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Waiting for Xyrem-Sodium Oxybate is starting to get tiresome. I was referred in June 2009, and I am still waiting for a reply from the Primary Care Trust. I knew that it would take months to clear but now I am counting to 4 months. At a conference I met several people who were taking Xyrem and they said that it changes your life. It will change your life.  I  Have a good feeling about the new medication and I can’t wait to start to work at least part-time.
A friend of mine said yesterday: I don’t think my parents realise that I am trying to life my life to the fullest, in every way I can. It makes me frustrated when other peoples difficulty to understand the condition impinges on a person with narcoelpsy’s life. I wish I could say that I don’t care! My mother does not understand my condition and that makes me sad so saying that I don’t care that would be a lie…

If you would like to read about Xyrem – Sodium Oxybate, register with  British National Formula, it is easy and free and accurate.

I wrote this post last year – I am still waiting for a reply. My application went to the wrong PCT so it needs to be resent so I am probably looking at receiving a reply lat summertime 2010. It is difficult to predict weather I will qualify for help. My neurologist says that I am the ideal patient for sodium oxybate but still the financial climate is not great and the drug is still very expensive in the UK.

Written by Queen of Sleep

February 25, 2010 at 1:39 am

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