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

I hadn’t planned on writing this. Originally I was going to keep it pent-up. But the whole point of Dystonia and Me is to share with you all the highs and lows of this condition and the many battles I fight along the way. As I mentioned in a post during awareness week, I was abused physically and emotionally as a teenager. I have since had a lot of therapy to help me come to term with this and move on from that period of my life, which I have done. I have always strongly believed that you should be completely honest with your doctor. After all how else are they meant to successfully treat you if they do not have all the information they need?

The way many doctors have treated me after learning I have a history of abuse has left me wishing I had never informed them of it. This specifically applies to my GP.  It seems that every aspect of my sanity has been called into question. I have never been so insulted. Yet it would seem that I am expected to roll over and accept this as the norm?!

My GP called me into a meeting to explain himself last week. At the time I was slightly pacified. Yet as I sit here, redrafting blog posts for college (exam prep), I find myself becoming incensed. This same routine has gone on for years now. Is it really so hard to believe that an abuse victim can move on with their life and be coping well, despite having a movement disorder? I am absolutely fed up of having to reassure him over and over that I am not depressed, that my past is not the route of all my problems. Even informing him that the genetic test showed that the Dystonia was genetic did not seem to make a dent in his warped view. As I keep pointing out to him, I am not the one dragging up my past it is him.

It worries me how little so many doctors know about Dystonia. My GP has looked after me since 2012, and yet still clings to the idea of abuse being the root of all my problems. This is despite having letters from my neurologist and my cognitive behavioral therapist telling him that my past has nothing to do with my Dystonia. I know that I am not the only sufferer experiencing this problem. Having to fight against doctors is hard. Standing up to them is frightening, I respect my GP, but at the same time he angers me so much because he is not taking the time to listen to myself or my neurologist. By standing up though there is a chance he may learn. I keep hoping…you never know. He may change.

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Comments on: "Abuse… A Doctors Get Out Of Jail Card" (7)

  1. My GP does the exact same thing and it is always mentioned by my consultants registrar. They don’t seem to understand that, as a survivor, we can lead full, productive lives. Every time I have a flare up, my history is mentioned which just leads to stress and making my dystonia worse.

    It was even mentioned in my last discharge letter by said registrar. Good luck to you with making them stop. I’ve been trying for 20+ years.

    BTW; I really enjoy your blog. It’s the most honest dystonia blog i’ve read.

  2. Doctors love to blame your physical problems on psychiatric causes, because it absolves them of needing to do more than refer you to a psychiatrist.

  3. sheryl727 said:

    After three years I think you have given him more than enough time to change. It’s time for you to find a new doctor and to report this one to the medical association. He is not acting in your best interests and he is not “doing no harm”. To continually bring up your past and try to blame your current health issues as being related is just mean. You have found a way to cope with your past and move on. You are seeing him for very real medical issues. There is no reason to keep bringing up your past. He is not a psychiatrist. He could suggest you seek therapy but what he is doing is undermining your peace of mind. Leave him.

  4. i have a problem with my Dystonia. my last injection made my hand go completly numb but before i left his office it had mostly wore off. now my middle finger and ring finger wont raise up. none of my fingers will bend at knuckles closest to fingernails. will have an EMG next week will it tell me anything about my Dystonia. i also have Dystonia in my neck also.

    • Kerry McDaid said:

      Hi. I’m sorry to hear you are having such a hard time with your dystonia. I also have it in my neck and shoulders, and have injections as well, the last of which were done using an EMG machine. Alas, the EMG does not tell you anything more about the cause of dystonia. However, it measures the level of activity in affected muscles so injections can be targeted more precisely. Personally, I would recommend having them done using the EMG because, although initially it can be painful, I find it much more effective than just having the injections alone.

  5. I can understand your GP; my opinion is that many persons do have this gen what can cause dystonia, without being active, but it could be triggered by some event, like your abuse, stress at work or other “traumas”.
    My wife, she passed away in 2013, she always suspected the divorce of her parents when she was about 3-4, as a cause, she stayed more than a year with her grandparents in another city, and when she was 7 (1957) the dystonia started.
    Then her parents came back together again, but the dystonia didn’t disappear but slowly changed into generalized dystonia; in 2002 a neurologist found it to be Dopa Responsive Dystonia, treatment with Sinemet gave some relief, but this positive effect disappeared after a number of years.

  6. Kerry McDaid said:

    I think there is a tendency for GPs to guess at the causes of dystonia because they do not fully understand it. This isn’t helped by the fact that, not so long ago, it was considered to be a psychological rather than a neurological condition. I also think some GPs have a ‘lazy’ way of thinking sometimes – i.e. they look for the simplest solution, not the correct one, because then the patient/problem becomes someone else’s responsibility. However, I am fortunate enough to have a very good GP, who takes my concerns about my condition seriously, without jumping to conclusions about my mental health. So there are some decent ones out there. It’s also worth bearing in mind that, if you are not happy with how your GP is treating you, you are entitled to a second opinion within the NHS. You can also make a formal complaint to the General Medical Council if the problem persists. Anyway, whatever you decide, good luck 🙂

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