Fighting Dystonia, Chronic Lyme Disease & EDS Type 3… any questions?

Yesterday I phoned the Breakspear hospital in Hemel Hempstead which has a reputation for being fantastic at treating Lyme Disease. It is unfortunately a private hospital so is costly, however my health means a lot more to me than money. I spoke to one of their patient liaison officers about what I was aiming to get from the appointment, specifically the information I need as to exactly what medication I need to be taking and in what form, such as oral or intravenous, so that I can go back to my GP and ask to have the treatment done on the NHS. The P.L.O reassured me that they could tell me all of this in the appointment and that it was up to me where I seek treatment afterwards. I am hoping the NHS will treat me but if not I shall use this hospital. I am very lucky that I don’t live very far away from it.

As I did not want any tests done whilst I was there they are able to see me on the 7th August. This is fantastic as they originally offered me an appointment for the end of September. I am slowly composing a list of questions for the Specialist, as I do not want to forget to ask something vital whilst I am there. I am really looking forward to this appointment and hope it will be all I want it to be.

This morning i went blind and as usual due to the pain it triggered off a seizure. Unfortunately I was sitting a little too close to the edge of the bed and seized off it on to the floor. I think I hit my head on my scales as when I came round my head was really throbbing. My body did not take kindly to my fall and has since played up for the rest of the day.

This evening my poor mother has spent hours in my bedroom looking after me and preventing me from having another fall whilst my whole body spasmed and I had many seizures. My Non Epileptic Seizures really take it out of me, and as a result they leave me wanting to just curl up in a ball and go to sleep. Tonight I am feeling more tired than usual but I think this is because I had to take a diazepam to try to control my spasms and seizures.

Despite my body misbehaving today I am still on a high from Tuesdays consultant appointment and from the excitement from my upcoming appointment with a Lyme Disease Specialist. Things are finally looking a bit better!

 

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Comments on: "Spasms, Seizures and Specialists" (3)

  1. sandy evason said:

    Becky, I think I am going to call you Brave Heart. You are amazing and I am so pleased to read that your chat with the Private bods went well. You and your family are truly amazing even though it is incredibly hard for you all. I keep you in my heart and in my thoughts and fervently hope that NHS will supply the treatment you need. Sending you my love and support, albeit, from a distance, but in my little circle alone, there are many people sending love and positive vibes and there must be many, many more who read this. love and hugs xx

  2. Excellent quote at the end Rebecca xx

  3. Karen Thompson said:

    Have a good holiday Rebecca and try to forget your Dystonia and everything else :-). It may not misbehave if you ignore it. Take care hun xxx

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