Has anyone ever kept a diary of symptoms? I am doing so but does it hold any weight with the medical professionals. At the moment the haematologist and therefore GP are saying my symptoms are not linked to my PA but if I have a diary to show that they improve after an injection but rapidly return not long after surely they can't deny there has to be a link. My latest addition is sharp pains down the back of my head - the kind of pain you get when you move your head suddenly and get a crick in the neck, though the pain is permanent (unlike with a crick in the neck).

8 Replies

  • I've been keeping a jornal for the last two months. I record my medication and my fatigue level. I chose fatigue as that is the symptom that varies the most and that I find easiest to quantify.

    I used Excel to plot the dates on which I used a patch (1mg or 5mg MeCb) and when I had an injection (1mg HOCb). At my last GP appointment he wasn't too keen on moving me to weekly jabs, thinking that something else must be causing my fatigue. But the fact that I had bad balance problems and paraesthesia made him doubt that decision. The graph was the clincher - it really did seem to convince him that B12 jabs were making a difference.

    Here's the graph - frankhollis.com/temp/Fatigu... - it goes up until 15th January because that's when I see the consultant haematologist, and I feel I may find it difficult to persuade them. My GP wants me to stop supplementing after my jab due on 30th Dec - to maximimise how crap I feel after two weeks cold turkey.

  • Thank you. I like the idea of a graph.

  • I think I'll add numb toes to the diary - a mouse trap just went off on my toe and it didn't hurt ;-)

  • I too have had head pains and frequent clicking neck for about 4 years. Not connected, according to gp, but strange how it has gone with the exception of a few rare occasions now, since using b12 patches, and tablets!

    I also kept symptom listings which were ignored by gp - it seems you have to have a gp willing to listen and accept that the patient knows thier own body, and then work together, to if not cure the condition, then at least make the patient as comfortable as possible whilst having to live with it.

  • This is the problem I am having - according to my GP none of my symptoms are due to my PA. I am off to see the gastro in a few minutes so hoping I get some understanding there. This is all getting just a little frustrating.

  • Being a software engineer, I created a whole web-based application to keep track of and graph my symptoms, medications, test results, food, sleep, etc. It's what led me initially to B12. I had hoped to further develop it so that others in the community could use it as well, but unfortunately, my symptoms have gotten too severe to allow much work on it anymore.

    Previous to the app, I also used Excel to log and graph symptoms and medications as others have mentioned. There was so much randomness in my symptoms from one day to the next that this data was only really useful in showing trends over time, which progressed so gradually as to be almost imperceivable. I augmented that data with a Word document containing specific descriptions of the symptoms and their initial presentation and a timeline of what doctors, medications, and (false) diagnoses had occurred over the years of my illness.

    I've found that the primary reaction from doctors to being presented with my "information packet" was that of being overwhelmed. They're so shocked that a patient would worry about their illness this much that many of them subsequently took the leap to calling it OCD or hypochondria. However, I found it just as shocking that more patients weren't as deeply involved and willing to do whatever it takes as I was. In the end, I think it's a wash to give doctor this much information up front--very few of them show any appreciable interest. It's probably best to just make sure you're keeping yourself (and your family) as informed as possible, and maybe keep the information handy on your mobile device in case a doctor is in denial that you know your condition more than they do.

  • Yup, I totally agree about the possibility of information overload. That's why I chose to only plot fatigue vs treatment. It's simple and obvious. It also helped me to realise that the patches don't seem to be doing anything at all.

    It's even more obvious now that weekly jabs really do make a difference. I inject today, then nothing for two weeks until I see the haematologist.


  • I agree that judging the effectiveness of treatment is one of the best uses of logging symptoms. It keeps one from falling prey to the placebo effect.

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