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

On Tuesday I went up to London to see my lovely neurologist. It was overall an extremely positive appointment. I was very much in need of my Botox injections as in the days leading up to it my Jaw spasms were back. I had my usual six injections (eyes, jaw and neck) and then two my calf. We are hoping that injecting Botox in my calf will prevent the spasms that cause my feet to turn upside down.

I like to keep myself busy, but my neuro has really stressed to me that this is something that has to take a step back for now. I need to slow down, and do less than what I am doing. Doing too much puts me at risk of running myself down and making my condition worse. This is not the first time I’ve been told this but I am really going to try to work on in this now. I don’t want to put myself backwards, I want to keep going forwards and if slowing down is what it takes then I’m going to make a conscious effort to do so.

I’m not seeing him again until the 18th March, which is 7 weeks from when I saw him on Tuesday. I would normally see him every 6 weeks for my injections but there was no clinic on the 11th. This concerns me slightly as the spasms in my jaw tend to come back around week 5, and I don’t want the pain causing a seizure or interrupting my college commitments. However I have not had a seizure in a while so I am hoping that if I fill myself up with painkillers then I should be fine.

This weekend, I went out and saw friends. Now it was just at a mates house watching movies with them all, so I’m hoping this doesn’t count as overdoing it!? It was so great to sit back and have a laugh, and just feel like me again! I can do a lot more now in comparison to a year ago, but activities like yesterday make me feel like I am still in there somewhere, Dystonia and Lyme Disease have not truly taken over.

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Comments on: "Positive Neurology Appointment" (5)

  1. Gary Spindlow said:

    I have had generalized dystonia for many years, and have taken every medication known to man kind. I have under care by a Neurologist and he referred me to a Neurosurgeon. The Neurosurgeon recommended Denervation surgery, but that never seemed to help. So I then was referred for DBS Surgery and that has helped me a lot. Good luck to you.

  2. sandy evason said:

    My, how well you are doing and good to hear that you are taking such sound advice. I so admire how strong you are (whether you wanted to be or not). You are truly an inspiration in a world of whingers you are a breath of fresh air xx

  3. So pleased to read about a positive appointment with our neuro. I have dystonia in the neck and voice for the last year. My nuero has suggested botox, but at each meeting she defers to some other ‘test’. I am getting worse, making me more social phobic than I used to be. … Its interesting reading your post that you can have periods when you feel ‘normal’. Because my neuro also said botox might not be right for me. I remain upbeat with yoga every other day to stretch out my neck muscles, and do deep abdominal breathing to help me relax, I am working at an Arts Degree which I work at from home, to keep me intellectually stimulted. I know when I overdo things (3 hours of housework) it can set me back days when I am in absolute agony of pain and fatigue.

    • Again, have you tried Neurontin / gabapentin??
      I hate pills, but the agony I went through was
      eased with the very first capsule. Please do try it.

  4. You sound like I was once, 16 years ago, I would go to Dr. George Paulson of Ohio State’s Parkinson’s Clinic of Excellance. The greatest doctor in EVERY way. Beyond words.
    Anyway, after a couple years of iffy injections, and knew he was the best, he mentioned what was then a new ‘thing’ that helped some with my condition (tonic spasmodic torticollis, and the REALLY painful variety of it). Neurontin/gabapentin. If you have not tried it, then you should~! I never had the two vial round of Botox (well, maybe in my FACE soon) after that came into my life. Definitely expensive here in The States, but can’t have a life without it.

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