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

On Friday my jaw developed a painful tremor (see video on previous post) that has caused me more and more issues. Since Friday I have visited the out of hours doctors, been rushed by ambulance to hospital, and had an urgent visit to the dentist as the tremor is actually dislodging my teeth! It all is beginning to get a little bit too much and I desperately want the pain to go away. Knowing that the tremor is actually dislodging some of my teeth concerns me a lot. I still have a few baby teeth with no adult ones underneath them, so to know that this tremor is dislodging them is rather alarming. The Dentist I saw was an extremely lovely chap who reassured me that everything would be done to keep my baby teeth in for as long as possible.

As I have mentioned previously we have been emailing my consultant for several weeks now asking if he could book me in for Botox injections. Today I finally got a date, for three weeks time (July 16th). This is 5 weeks later than normal. Now this may not seem like a long time, but being in agony 24/7 and struggling to eat and drink makes the situation almost unbearable, I am currently only just about coping by taking Oramorph (morphine) and Diazepam. It is also extremely debilitating. I have pain triggered non epileptic seizures, not only does this often result in me ending up in hospital but it also puts major parts of my life on hold. I normally go to my local Riding for the Disabled stable on a thursday for a riding lesson, this is an activity that is extremely important to me and one that I thoroughly enjoy, however I am unable to ride when I am having so many seizures.

There was also no mention of my week admittance into the hospital that was meant to happen over two months ago in this email. I am now sadly looking into transferring to another consultant at another hospital as I feel completely neglected by my consultant. I feel like he dangles hope in front of me and then snatches it away without warning.

On a more cheery note I got my splint for my left leg yesterday! This makes things like getting in and out of the house so much easier and has so far been a joy to wear. It is amazing how much of a difference the little things in life can make!

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Comments on: "Troublesome Tremor & Consultant Conundrum" (3)

  1. Shelly Forster said:

    Since I am somewhat new to your blog, and don’t know your history well, then some of my questions may be redundant. If so, I apologize. First of all, I’m so sorry for your pain and even more for the poor treatment from the health professionals in charge of your case. I too endured the ignorance and just plain uncompassionate attitudes from those who vowed to “first do no harm”!! It’s inexcusable! When you deal with debilitating pain, the last thing you should have to fight for is good health care. I now go to the Mayo Clinic in MN for my Botox shots…have you tried to get in for consult with them? I hate those crazy painful shots, but the Dr. I see there is amazing and so very concerned for me. Besides the shots control the muscle constrictions and lower my pain levels significantly. I really hope Botox works as well for you. I also have a great dentist, he provided a bite guard which has saved my teeth. Problem is disability won’t cover charges, so just more “stuff” to deal with.
    Have you tried any other meds for spasms? I had to try several until I found one that works very well. Also, beside horse therapy, do you do anything else? I have been trying to find something to encourage more mobility in my lifestyle. However, horses sorta scare me:)
    Again, thank you for sharing. You are much braver than I, and no doubt your testimony is helping many who need to know they are not alone. Regardless of our adversity, there is hope when we “hold each other up”. Blessing, Shelly

    • Hi Shelly, thank you for your comment. I have not heard of the Mayo Clinic, I shall give it a google and look into it . Thank you so much for the suggestion. Botox works great for me, the problem is getting my consultant to give it to me on time. Other than riding, I see a personal trainer once a week. I am trying to find more activities to do but live in a small town which is not very disabled friendly. I am on and off Baclofen often depending on what my GP has decided to. I want to try more meds out but my consultant is reluctant but im sure il get there.
      best wishes

      Rebecca
      xx

  2. Rebecca, As always, I’m thinking about you. Just keep trying to see the sun looking to burst through on a foggy day! -Pamela-

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