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

Seething with Rage

I am so angry right now. I have tried to get in to see my GP for about two weeks now, but as I have been unable to see him I asked him to phone me. I wanted to discuss having IV antibiotics arranged. When I saw my neurologist 5 weeks ago, he agreed that a lumbar puncture would do me more damage than good and that it was worth switching from oral antibiotics to IV.  My neurologist put all of this in a letter for my GP.

My GP is usual a great source of help, and I usually think he is fantastic – however usual is the key word here. Today was one of those days where he was exceptionally un-helpful and left me in a rage. He stated that he did not want to arrange it as it would be “complicated”, and he wants me to come in so he can explain why it was “complicated”. When I pointed out the reason I had not been into see him was because he was fully booked in the evenings when someone is at home to take me, he claimed that was nonsense – I had to bite my tongue at this point as I’m sure the receptionist would not lie to me for 2 weeks about him being booked up. He then asked to speak to my mother!!!! Now I am sorry but I am 20, why on earth is he asking this?! Now my mother comes to all my appointments with me, but really what is so complicated that he has to explain to my mum instead of myself?

I feel disgusted, disappointed and disheartened. He wants ANOTHER letter from my neurologist about IV treatment. Luckily I have an appointment with my Neurological Consultant next Tuesday, so I shall explain and ask him to write another one then,  but this is all beyond ridiculous. He already has one letter stating it, how will another one saying the same thing make any difference?

I could go privately and pay for the treatment myself, however it is very expensive and I don’t see why I should to do so, when my neurologist was happy for it to be done on the NHS. Why does the medical profession insist on picking a fight with me at every hurdle? All I want is to rid me body of the disease that caused my Dystonia, is that really too much to ask? After all if they had picked up on it 14 years ago I would not have Dystonia now!


Comments on: "Seething with Rage" (4)

  1. sandy evason said:

    Becky, how infuriating for you. All you can do at the moment is to get another letter and then, ask your doctor if he always employs liars as his receptionists. This sounds like it is a time for straight talking, but that works both ways. You must have realised by now that not all medics sing from the same hymn sheet. Also, it could very well be about your GP’s budget OR the NHS Trust that funds it. Maybe it would be a good idea to get your SECOND letter, go and talk to your GP and ask him directly, why he is not prepared to listen to a SPECIALIST. Maybe he has a view that has, thus far, not been explained to you. Whatever the situation, I send you positive thoughts, love and prayers for a step forward on your journey. Love and hugs xx

  2. Val Groovenhoff said:

    You need to document every phone call time date, can’t trust anyone who works in a doctors office. They are overworked and under paid. I feel your frustration. To you it’s simple, to them it’s complicated. Do you live in Europe with a National health care system? It’s coming here and I sooo dread it. I can’t wait to jump thru hoops to get my Botox,

  3. Val Groovenhoff said:

    If you are unable to write, then try to have someone do it for you. Yes positive good thoughts to you. Stress is very bad for Dystonia, yet they are the ones that stress us out

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