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

Today I went up to London for an appointment with my neurologist. It went fantastically well. This was only the second time he has seen me with my jaw not in spasm, the last time was our first meeting last October, and he seemed very happy that I was not in agony this time. As usual I went armed with some ideas/questions that I wanted to discuss with him.

He brought up the fact that I had seen the infectious disease doctor the other week, and said that he was happy for me not to have the blood tests and lumbar puncture, but would arrange it if I decided I wanted it, and he was happy for me to get my gp to arrange for me to have 2-4 weeks of IV antibiotics. I am thrilled at this, as it was not a conversation I expected to have with him and it went completely in my favour. I have been on oral antibiotics for several months now, and adding IV antibiotics into the equation should hopefully get rid of whatever Lyme is left.

I had my usual injections in my neck and jaw, however after discussing the ongoing issue of my glasses setting off more eye spasms he decided to inject Botox around my eyes to see if this helps improve things. I am really hoping this helps as I am meant to wear my glasses for pretty much everything, so for a fair while now I have dealt with everything being rather blurry.

I brought up with my consultant that I would like to have CBT (cognitive behavioural therapy) to help me manage my pain triggered Non Epileptic Seizures and neuro-physiotherapy to see if that will help me with my spasms. He was great with this and agreed both would be a good idea and that if I went through my GP I would be able to have it done locally. He has also offered to speak to the neuro-physiotherapist, when I get assigned one, about my condition so that the physiotherapist understands it better and therefore can treat me appropriately.

Overall I am completely over the moon with how well the appointment went, and have left with a date in hand for my next lot of injections in six weeks time.

 

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Comments on: "Amazing Consultant Appointment" (2)

  1. I wasn’t aware that you had Lymes. Did you have this before the on set of your neurological problems? I also Had Lymes. It was before my Dystonia started. Lymes is not taken very serious here. Could you fill me in on the connection if there is one and what you did?
    Thanks-Jillie

    • Hi,
      I was bitten by a tick which gave me Lymes Disease when I was six (14 1/2 years ago) however we never knew about Lymes so never questioned why I was suddenly getting ill (diagnosed with chronic fatigue syndrome and things like that) I am now receiving treatment for Chronic late stage neurological Lyme Disease.

      Lyme Disease CAN cause Dystonia if it affects/damages that part of the brain. Through asking around online I have discovered many other people who have dystonia caused by lyme. My neurologist has also confirmed to me that they know Lyme can cause Dystonia.
      xx

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