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

I am now on the final countdown until Tuesday when I have an appointment up in London with my Neurologist. Over the last few days I have gathered lots of different information so that I will be able to present a concise, confident and convincing argument to him. I do plan on letting him administer my Botox injections first though before getting into any debates with him!

I have a number of issues that I need to discuss with him. The first being the timing of the injections. When I see him on Tuesday I will be 6/7 weeks over due for my injections, this is ridiculous especially as the spasm and tremor in my jaw is actually now loosening my teeth! He has always insisted that the best and quickest way to get an appointment is by emailing him, however the recent months have proved this method to be useless so I shall not be leaving the hospital without an appointment.

Another issue I would like to discuss with him is Lyme Disease treatment. I am currently on oral antibiotics, however for late stage neurological Lyme Disease a mixture of different high dose IV antibiotics is needed. I asked my GP about this the other day but he wants me to get my consultants approval for the go ahead first. I am not sure how likely I am to get it, but I am going to try my best and will not give up easily.

I feel this appointment will decide if I shall stay under his care or not. As much as when I am with him I love him and have confidence in him, since April he has let me down. He has dangled hope in front of me and then never come through on his offer. I know this is not deliberate but at the end of the day I need to be under a consultant who can provide me with the treatment I need at the correct time and who will stay true to what he says.

I am very much looking forward to Tuesday though as I will finally get my very much needed Botox treatment for my Oromandibular Dystonia and my Cervical (neck) Dystonia.

 

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Comments on: "Countdown to Consultant appointment" (2)

  1. Joan Piedmonte said:

    Hope all goes well. You are your best own advocate, so go with your gut on this doctor. You deserve the best treatment you can get. Delayed Botox injections are unacceptable because it affects your quality of life in a major way. Good luck.

  2. Carina Mok said:

    All the best Rebbecca for tomorrow. I totally agree you should not leave without another appointment. I always get the appointments on a three months interval straight away. With they eyes we are pushing the boundaries to two months intervals. I am fully aware of the risks with the immunity by doing this but I am older than you and need some kind of life now. i am going to ask my neurologist when I see her in the beginning of August to check me out for Lyme’s desease as I don’t think it has been done.

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