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

On Tuesday I wrote an email to my consultant, explaining that now my whole body was being affected by my dystonia and that I no longer knew what I was expected to do. I have tried to bring a number of positive activities into my life and carry on with everything as much as possible without letting my Dystonia affect me, however all of these activities are rather hard to do when your whole body is out of your control. I asked him for advice, and if I he could refer me to anything or suggest anything I try. Yesterday my consultant neurologist replied, he apologised for how hard it was to get me treatment due to long waiting lists, and has offered to take me into the hospital for a few days (up to a week). Whilst in the hospital I shall see him and the Neuro-physiotherapists. I am rather hopeful that this shall mean that  I shall come away from my short stay there with a better idea of how to cope/work around my spasms.

I also received a couple of letters from my consultant in the post yesterday. One of them was a letter for us to take when ever we go to hospital/A&E, so that the hospital know how to treat me. He sent us several copies of this letter, which I am extremely thankful for, as it should enable me to receive the correct treatment with ease from them. Another letter was a copy of the one he has sent to my GP, explaining the treatment he is currently giving me (botox injections to the jaw and neck) and that he wanted me to start me on Clonezpam. I had mentioned to my GP the other day about the fact my consultant wanted me on this new medication, but because I did not know the dosage he was unable to prescribe it for me. This now means that I will be able to phone my GP tomorrow and ask him to prescribe it, as the dosage has been written in the letter. I am rather excited to try this new medication, as it should hopefully prevent my Non Epileptic Attacks.

I am feeling ever so happy today, as I feel like this upcoming hospital admittance, and the new medication should do me the world of good. Knowing that there is a plan in place is a very calming thought and I feel like I can relax and not worry about my little Dystonia alien as soon the right people will be able to see his antics and help me.

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Comments on: "Upcoming Hospital Admittance" (12)

  1. Joanne Wetherall said:

    Your posts are always so positive and brave, I am really pleased that at last you have a response from a medic which will get you the right attention when you need it most. I really pray that your inpatient stay also brings all the benefits and relief you deserve.

  2. I hope things are looking up for you.

  3. sandra moon said:

    I really pray you get the treatment you need while they observe you during your hospital stay. Thank you so much for sharing your experience:)

  4. susanserene said:

    Great news! Your diligence in reaching out to your docs is beginning to pay off! I’m proud of you for advocating for yourself and I hope and pray that A) the clonazepam does it’s job and B) that the hospital stay helps the docs determine how best to treat you! Hooray! I’ll be keeping you close in prayer this week. Good luck!

    Just remembered, I learned over a year ago of a young girl fighting cancer who came up with the phrase “Never Ever Give Up”, NEGU. I try to live this motto and it does help me through the difficult days. I’ll remind you of it when I can! NEGU, dear girl!

  5. Elizabeth Sims said:

    After so long feeling lost and uncared for, I hope you will be able to get control of everything with this new drug. Praying for you and for the doctors who work with you.

  6. Never give in!!!!!!!!!!! Love your blog. Will b back to find out how you r. Have CD with a secondary in my hands. Hope it brings u PEACE!

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