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


This week has been a complete rollercoaster of emotions. Beginning with excitement, this quickly turned into desperation and turmoil, concluding with frustration and nervousness.  On Tuesday I attended a physiotherapy appointment, I was under the impression that this was to be the first of at least weekly appointments. I had been extremely excited for it as I was anticipating news of trialling a second skin splint which I was hopeful would make a difference to my leg spasms.

When I had seen my Neurologist last he had mentioned to me that he had spoken to my physiotherapists the week before to advise them on how best to treat me, and that he was very keen for me to start having intensive physiotherapy locally. He was also happy for me to trial the splint and did not say too much about it. So you can imagine my total shock on Tuesday when my physiotherapists told me that my Neurologist had advised her to discharge me and not to refer me for my splint! She was left with the impression after speaking to my Neurologist, that after I have my IV antibiotics for Lyme Disease and was cured of that then I could have physiotherapy. She was shocked to learn that I have been denied IV antibiotics by the NHS unless I have lumbar puncture, which my Neurologist has recommended I do not have as it puts me at risk of developing more Dystonia.

I left the appointment on Tuesday in a completely state of turmoil. Without IV antibiotics and without physiotherapy what chance of any sort of improvement do I have? I was furious with my Neurologist, how could a person have two completely different conversations within the space of one week. Then, Thursday afternoon, a follow-up letter from my last Neurology appointment arrived reiterating that he wanted me to receive intensive local physiotherapy. I could not be more frustrated, I can only presume that they must have had a rather ridiculous misunderstanding. Yet I question how that can even happen in the first place, the conversations reported are at extremes with each other.

I am seeing my Neurologist on Tuesday for my next lot of injections, so will be able to clear this matter up with him then. It took over a year and a half, with a lot of jumping through hoops just to receive physiotherapy, so to have it taken away after one session is not something I am going to let happen without putting up a fight.



Comments on: "Exasperated" (9)

  1. like everybody I do hope this misunderstanding can be cleared up during your next visit…

  2. what is this second skin splint? my daughter has dystonia in her foot, it turns in at a right angle and she has to wear a thick solid plastic splint in the day and a similar one at night. She is always getting infections in her leg because of this but she can’t walk without it as she has no strength and very little felling in her leg. She last saw her neurologist back in Feb and isn’t seeing him again till oct.. can this be right?? she is in chronic pain all the time. xx i hope you get the answers you need and soon..same with my daughter, she is 35 by the way x

    • Hi Mandy, Thank-you for your comment. Second Skin splint from my understanding is a lyrica based splint that helps provide feedback to the brain, its a fairly newish and either works really well for Dystonia or not at all. I too was using a thick solid plastic splint but I felt that sometime it was just aggravating the spasms. Its up to the Neurologist how often he see you, for botox it is normally every 3 months, though I get it every 6 weeks as it does not last well for me. I hope your find something that helps soon. xx

  3. Wow that was unusual. I just wrote an very long comment but after I clicked submit my comment didn’t appear.
    Grrrr… well I’m not writing all that over again. Regardless, just wanted
    to say fantastic blog!

  4. This is a topic which is close to my heart… Take care!

    Where are your contact details though?

  5. Very nice blog post. I absolutely love this website.
    Stick with it!

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