Posted in Archive, June 2013

Consultant Update

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The last couple of days by spasms have been extremely painful which has resulted in an increase of seizures. My necks spasms in particular seem to set these seizures off. Even though the increase in neck spasms is hideous it shows just how much of an incredible effect the Botox had for me. The Botox decreased the severity and frequency of them dramatically.

I finally heard from my consultant the other day. I received an email saying that he would contact me with a date for my Botox injections, I am hoping that this will be soon. He did not address the fact that despite on April 5th he said would admit me for a week and still hasn’t. I have started to accept that fact that this is rather likely to never happen, which I am disappointed about.

I have started making a list of questions I want to ask him. I would like him to consider the fact that Lyme Disease can cause Dystonia and that it could be the root of my problems. I plan on asking him to remain open-minded during the appointment as well, as I would like to discuss with him again certain medications I would like to try. I also want to have an open discussion with him about Deep Brain Stimulation (DBS).

Whilst there is a possibility that my symptoms could improve if it turns out I have Lyme Disease, there is still a real possibility that some of my more debilitating spasms such as the ones effecting my legs could remain in the same state as they are now. I just want my consultant to consider it. I am not asking for it just yet and I would happily try all the medications and jump through all the hoops they want me to first. However at the end of the day I would rather not spend the rest of my life in a wheelchair, and whilst DBS does not offer a cure, it offers the possibility that I may not have to rely on the wheelchair all the time. I am hoping that he will understand that I don’t want him to say yes or no just yet, that I just want him to have a think about it.

One thing I have learned through all of this is that if you don’t ask and plant that little seed in the doctor’s mind then you definitely won’t get it. If, however, you plant that little seed it may just grow into a real treatment avenue which could offer hope. There is no harm in asking!

 

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Author:

I'm 27 years old, a mother, author, partner and spoonie. I suffer from Dystonia,POTS, EDS, Osteoarthritis and Lyme Disease. I have set up my blog to help spread awareness and bring light to this condition. This blog will be full of all my experiences that happen during my dystonia and chronic illness journey, from natterings, musings, moans, laughs, highs and lows. :-) It will be a little bit of everything

One thought on “Consultant Update

  1. ShannanSenior – I am 22 years old and suffer from a neurological movement disorder called Dystonia and have been now for many years. I underwent DBS (deep brain stimulation) surgery in August 2013 to help relieve the debilitating symptoms caused from this disorder and enable me to live life to the full again :)! I have set up this blog to help raise awareness of this condition and to share my experiences with you throughout my journey.
    shannansenior says:

    Good Luck Huni all the best 🙂 x

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