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

Mixed Appointments

I’ve had several appointments with different professionals recently with mixed results. At the moment I feel like I am at a stalemate with my physiotherapists with them determinedly ignoring my Neurologists instructions to see me weekly and me refusing to let them ignore his instructions without putting up a fight (in a calm but firm manner). When I last saw them they gave me exercises to do at home and said they would see me again in two weeks. However if they get their way this will be the last time they see me, as they feel that until I can weight bare there is nothing more they do to help me.

Now I have to bite my tongue every time they tell me this as it was they who told me that I must absolutely not weight bare! As you can imagine this has left me very confused. To add to the confusion, only the other month they informed me the ligaments in my foot were damaged and extremely lax due to my spasms hence why I am not allowed to weight bare, yet now weight baring is all they are focused on! Whenever I ask how my foot is to heal they tell me that is up to my Neurologists plan.  The worrying thing is other than more physiotherapy there is no plan of action, when I last saw my neurologist he explained he had limited resources so treatment was limited.

One of my physios big things have been that I need to get myself a new splint made, as they have now decided they are not going to refer me for a second skin one, though it has not been explained to me as to why. I saw my local Orthotics department on Friday, he was a very lovely man and I must admit that I was slightly amused to see he shared my frustration at my physiotherapists as apparently they should have written to him if they were going to make recommendations on splints. He informed me that in his entire career he had not seen such force in spasms and he did not think that splints would be of any use to me. He was concerned that if he made a splint that contained my foot all the way round then I could end up severely hurting myself when I spasm. I can see where his concern is coming from, and he is most likely right, however after much pleading from me he agreed to get his colleague who has dealt with my spasms before to take a look at me and make the splint. Even though I know this splint could result in injury, I am willing to try it. I am willing to try anything that may contain my Dystonia and make my life easier! It holds the possibility of enabling to me to walk if it works, I would happily risk injury for the chance to walk again. He couldn’t believe that my physiotherapists were not helping me more and that my Neurologist was not injecting my foot with Botox simply because I had been told not use it.

I feel like every professional I talk to at the moment contradicts one another! To me surely everyone should be saying right so the spasms have damaged your foot, let’s look at what we can do to prevent it from deteriorating any further than it already has and what we can do improve it. Surely that cannot be that hard to agree to try to do?!

On a brighter note I had a fantastic appointment with Rheumatology this week. I went to have my Hypermobility Syndrome assessed. It turns out I have Hypermobility pretty much throughout my whole body. He has agreed with my Neurologist that I need referred to an inpatient rehabilitation programme due to the pain and weakness in some sections of body. I found it very reassuring to hear him talking about the same inpatient programme despite not knowing it had already been talked about with me. In this regards everything seems to be going in the right direction.

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Comments on: "Mixed Appointments" (5)

  1. Am sorry that you have to deal with this. You are a lovely girl and your writing style is honest and a pleasure to read. Thanks for sharing.

  2. Sue Cohoon said:

    I’m so sorry you have to deal with these doctors who seem to have forgotten that their first priority is supposed to be their patient. As a nurse one of my biggest complaints is that the doctors don’t communicate with each other or put the patient first. They seem to have this “God complex” and have completely lost site of what’s really important. They should be required to have a refresher course on the Hippocratic oath every year with emphasis on “first do no harm”…..

  3. Hi Rebecca! I’m Jan I have Cranial Dystonia since 2009. I was given a 200 milligram dose of Botox this April to manage the pain in the back of my neck. Inadvertently, my head dropped causing a bunch more or neurological problems. My head is back up but I still have pain and need a neck brace. I don’t recommend Botox. Just wanted to share that with you. keep up the good blog and I appreciate it!

    • Hi Jan I think it is important that everyone with the condition that every time you have botox the reaction can be different, and can be different with different strands of botox. Luckily for me it is the best thing and keeps my worst symptoms in my jaw and neck under control. xx

  4. I also have dystonia and just had surgery on my foot because of my walking I’d love to hear more about your experience

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