Fighting Dystonia, Chronic Lyme, EDS Type 2 & more… any questions?

Posts tagged ‘second skin’

Exasperated

This week has been a complete rollercoaster of emotions. Beginning with excitement, this quickly turned into desperation and turmoil, concluding with frustration and nervousness.  On Tuesday I attended a physiotherapy appointment, I was under the impression that this was to be the first of at least weekly appointments. I had been extremely excited for it as I was anticipating news of trialling a second skin splint which I was hopeful would make a difference to my leg spasms.

When I had seen my Neurologist last he had mentioned to me that he had spoken to my physiotherapists the week before to advise them on how best to treat me, and that he was very keen for me to start having intensive physiotherapy locally. He was also happy for me to trial the splint and did not say too much about it. So you can imagine my total shock on Tuesday when my physiotherapists told me that my Neurologist had advised her to discharge me and not to refer me for my splint! She was left with the impression after speaking to my Neurologist, that after I have my IV antibiotics for Lyme Disease and was cured of that then I could have physiotherapy. She was shocked to learn that I have been denied IV antibiotics by the NHS unless I have lumbar puncture, which my Neurologist has recommended I do not have as it puts me at risk of developing more Dystonia.

I left the appointment on Tuesday in a completely state of turmoil. Without IV antibiotics and without physiotherapy what chance of any sort of improvement do I have? I was furious with my Neurologist, how could a person have two completely different conversations within the space of one week. Then, Thursday afternoon, a follow-up letter from my last Neurology appointment arrived reiterating that he wanted me to receive intensive local physiotherapy. I could not be more frustrated, I can only presume that they must have had a rather ridiculous misunderstanding. Yet I question how that can even happen in the first place, the conversations reported are at extremes with each other.

I am seeing my Neurologist on Tuesday for my next lot of injections, so will be able to clear this matter up with him then. It took over a year and a half, with a lot of jumping through hoops just to receive physiotherapy, so to have it taken away after one session is not something I am going to let happen without putting up a fight.

 

Disappointed & Disheartened

Yesterday I had my appointment up in London with my neurologist. I had been really looking forward to this appointment, as I wanted his opinion on a couple of things. Firstly on my new leg spasm and if there was any treatments he could suggest that could help it. I am taking 45mg/ml of Baclofen a day for it and whilst this is controlling it, it impacts my cognitive ability greatly. I am able to hold a conversation but anything that requires me to start actually using my brain and answering questions is too much and I am unable to do so, I end up relying on my mum or whoever is with me at the time to do so for me.The second thing I wanted his opinion on was on a type of splint that my physios are arranging for me to try called Second Skin. It’s a lycra based splint that provides  feedback to the brain, and it seems to work either really well or not at all.

For my leg he had no idea what to do other than keeping me on the Baclofen.  He is referring me for more intensive physiotherapy to see if that will help but other than that he was lost for ideas. So I guess all we can do is hope that these new splints when I try them work, because otherwise I do not know what to do. In regards to the splints he did not say too much, he said they could do no harm which is always good to know and that they may help but didn’t say much more on the subject.

The main reason I had been looking forward to yesterday’s appointment is that in a letter I had received from my neurologist the other week he had stated in it that he hoped to have an answer for me about my IV treatment for Neurological Lyme Disease by the time he next saw me. I took this as a positive statement when I read it as recently in conversations with my doctors it had all been looking like it could go ahead if someone could be found to oversee it. Sadly this is not this the case. The hospital that originally said this can be set up if you find a neurologist to oversee it, is now saying they want more evidence that I have Lyme. By evidence they mean a positive Lumbar Puncture result.

My neurologist has said that he can arrange for me to have a Lumbar Puncture very quickly and it is up to me whether or not I agree to go through with it. He is not very happy for me to have one done as it puts me at risk of developing new symptoms or my current symptoms getting worse. There is also the problem that I cannot actually guarantee I can stay still due to body spasms so for them to realistically be able to do the Lumbar Puncture I would have to be under a General Anesthetic. The tests for Lyme Disease are also extremely unreliable giving false positives and negatives, and with a years worth of oral antibiotics in my system its more likely to come back negative.

I started taking oral antibiotics for Neurological Lyme Disease this time last year, and we have battled for the correct treatment which is IV antibiotics for the last year. For a whole year I have been put under the impression that I would get IV it would just be a bit difficult to set up. Now I am extremely upset. All I have done since I left the hospital yesterday is cry on and off. The IV would not cure my Dystonia but it would cure my Lyme, and who knows how much of my body is that! I had all my hopes pinned on this!! I am terrified that now when they take me off my oral antibiotics, which I know will happen soon, that my symptoms like my hand spasms, that improved may come back. I could not cope with that!

My plan today is to phone a local private hospital that I know treat Lyme Disease and see if they will consider treating me without the Lumbar Puncture. If they won’t then I will have the Lumbar Puncture done as I would rather risk it and hopefully get treated then spend my whole life wondering what if I had done it.

I am feeling very lost, and sad right now and I know things can only get better. It’s just hard after spending a whole year having all my hopes pinned on this treatment to have it snatched away. On a positive note I did get my injections done, and he was so lovely and apologetic. I am lucky that I have him. I  just have to struggle on.struggle

 

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