Review…

Standard

I have been reviewing the previous blogs and I’m aware that they have been rather technical-medical in flavour. I suppose this is because I have bottled up a lot of questions over the past eight years, some my own, and others that have been posed by members of the UK yahoo group for HNPP. And having had a Nurse training, I am quite used to medical jargon, so it’s one hurdle I can clear quite easily.

Many of us feel that our questions and concerns about HNPP have been inadequately answered by our neurologists. It is not uncommon to feel that they do not have time for us, as our illness is,
A) Mild in comparison to other neurological illnesses
B) there is no immediate cure,
C) as a consequence of the ‘mildness’ it does not cause any significant disability, in their opinion.

I’ve never been a particularly outspoken individual. I have a very quiet nature, and find verbalising my thoughts quite difficult. The pressure of ‘consultations’ often leaves me feeling inadequate, and this is not helped by the attitudes of the Doctors. So there are many questions that have been unanswered or not even verbalised, and this blog has given me the opportunity to get them off my chest.

In my life I have seen many doctors both for myself and my children. I had never really had a problem with any of them, indeed there are many that I have a great respect for. So it was quite a shock to be treated in such an off-hand manner by the majority of the neurologists that I have seen. I would have been prepared to ‘shut up’ and ‘put up’, but my experience seemed to be replayed over and over again by the vast majority of people I have spoken to who belong to the HNPP groups.

So this is the reason for this blog,
A) to get these questions out into the open,
B) to stimulate discussion and to raise some awareness of the day to day affects of living with HNPP.

I would also like to point out that, although I have many physical problems I am quite aware that they are not all HNPP related. I have to cope with them all and the medical divisions that are obvious on paper are not so obvious when coping with real life. This shouldn’t prevent discussion of topics that are on the cusp of knowledge as regards to HNPP. It is OK to ask questions, they help to differentiate the complexities of the problems. Answers should be forthcoming, and if things are unknown then they should be declared as such.

Now I’m rambling, but wasn’t that always the case…

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2 responses »

  1. Having just had a genetic test come back positive for HNPP, I am only now formulating the questions for my doctor.

    I took a very long list of questions to my neurologist before the genetic test, and those questions likely prompted his suggestion of the test. I recommend this to anyone who is trying to find out more about what’s going on in their bodies… and playing an active part in my health care made the neurologist realize that I was not just coming to him for fixes. (as if that was going to happen.)

    And fortunately, my neurologist does not play the “compare the disabilities” game, and is concerned about the quality of my life and generally about how to preserve my mobility and function (my symptoms manifested in a bilateral brachial plexopathy that was beyond “mildly annoying”)… so he’s a definite keeper.

    Thank you for this blog.

  2. Hi Jon,
    I’m 29 years old from Israel, suffering also from HNPP.
    I think your blog is great. This post in particular… I’m experiencing the same problems when it comes for medical attention. The doctors I’ve meet throughout the years, didn’t make a decent effort to ask questions or to give any answers I’ve had.
    Thanks!
    Idan

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