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

My appointment with my Consultant today went amazingly well! I was so relieved that I did not have to argue with him, some of my questions he brought up before I could ask which was fantastic. He has offered to do my injections every 6 weeks – Guidelines state 12 weeks so this is a fantastic offer. I have left with an appointment booked for the end of the August!

He listened to all my concerns and questions and was very understanding. Knowing that I will be seen every six weeks is so calming, I feel like a huge part of me has breathed a sigh of relief as this will mean no more weeks on end of being in agony and my seizures should stay under control.

At my appointment today he administered injections to my jaw and neck, which was thankfully relatively painless, though my jaw did decide to go into an even more extreme spasm after the injection which was slightly amusing. I raised with him the issue that I am now unable to wear my glasses (which I am meant to wear for everything but walking – or in my case being pushed around) as when I do it causes a spasm around my eyes that makes me look sort of permanently surprised, he was unsure whether this was also related to my jaw spasm so has agreed that if this is still happening when I next see him he will do Botox around my eyes as well – this would be fantastic as it could help some of my eye spasm as well.

I spoke with him also about having IV treatment for Lyme Disease, he was a bit hesitant about what to say as he was unsure on what meds I would need and for how long. I explained that all I needed him to do was give the OK to my GP and that I would find a specialist Lyme doctor to discuss IV medications and length of time with. He has agreed to write to my GP saying Ok, which is fantastic. Now all I have to do is find someone to treat me.

The appointment overall was excellent and I really felt he listened to me. I am ecstatic that I have left with an appointment for six weeks time. I am going to be having an early night tonight as I am exhausted from todays trip to London, but I shall be going to bed an extremely happy bunny.

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Comments on: "Fantastic Consultant appointment" (3)

  1. Louise chamberlain said:

    AH that’s fab! 🙂 xxx

  2. Murray Wright said:

    Terrific, Your Blog was a great way to start my day. 🙂

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