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

Yesterday I had an appointment with ATOS to prove to them that I am disabled and to discuss/show them how much Dystonia affects me. After some horrific telephone conversations with them, which I am making a formal complaint about, and from reading some dreadful news articles about them, I expected the appointment to be awful. I had mentally prepared myself to meet a rude practitioner who was not prepared to listen. I was therefore pleasantly surprised by the lady who saw me. She came across as if she really did want to help me.

Now I don’t remember much of the appointment due to a few seizures I had whilst I was there but the bits that I do recall and the parts that my mother has informed me of paint a picture that goes in my favour. Upon arrival my feet were already in spasm due to the cold outside, then the lights set my eye spasms off, and some head movements I was asked to do set my head tremor off. The physical assessment side of the appointment was stopped early as the Doctor thought it would be unsafe to carry on with it. Therefore only the verbal information my mother and I gave her (which she typed up)  was complete. I left her with copies of two letters from my consultant as well. After everything she saw I do not believe she could write anything against me.  However I am still hovering on the side of caution until I receive the report.

This coming Saturday I have an appointment with an Infectious Disease specialist who has an interest in Lyme disease. I am rather excited and nervous for this appointment, as hopefully a treatment plan shall be discussed/put in place. I have had many conversations with his lovely secretary who has been extremely informative, understanding, helpful and has helped me trust I have made the right decision choosing this Doctor. I am trying not to get my hopes too high incase the appointment does not reach my expectations, however I am still very excited. I have prepared a list of questions to ask in the appointment so I know exactly where I stand and what treatment options are available to be.

I look forward to Saturdays appointment revealing my next steps!

 

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Comments on: "ATOS appointment & Upcoming Specialist appointment" (2)

  1. sandy evason said:

    Such a shame that you have encountered such rudeness and arrogance from those who should be more caring. Glad that the lady Doctor was more compassionate but still such a shame that you have had to go through this indignity. Sending love and positive vibes that you have a good consultation and outcome on Saturday. I will be keeping you in my heart and thoughts as you always are. Love and hugs xx

  2. joan.piedmonte@hotmail.com said:

    Thanks for the update. I will be VERY interested to find out how the whole Lyme’s Disease scenario plays out. I keep seeing connections mentioned between dystonia and the infection, but have never seen any statistics about the relationship of the two. I have been tested for Lyme’s only twice; both times negative. But I also read that this virus “hides” and will only test positive if/when it is active. I would be thrilled to have that be the reason for my dystonia, as there is a cure that way. Perhaps it is time for me to request another Lyme’s test, as after 6 years, I am no closer to an explanation for my diagnosis.

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