Fob-off Diagnosis (again)

About a month ago I decided to move GP surgeries to the other one in town, because after three years of being told – without any adequate process of exclusion – that I have ME/cfs with Fibromyalgia (although I have never seen a rheumatologist to confirm that diagnosis) and that nothing could be done for me, I had decided that enough was enough.

The first GP I saw at the new surgery seemed very young and inexperienced, and in fact he had never heard of one of my diagnoses – PCOS – (Poly-cystic Ovary Sydrome), although it is a very common condition, and he actually had to look it up on his little screen!

I discussed with him that ME is an illness that should only ever be diagnosed through a process of exclusion and I believed that had not taken place. I suggested a number of things I wanted testing, including pernicious anaemia and hashimoto’s thyroiditis, both of which run in the family. He stated that “everybody thinks it’s thyroid, and it never is”, which did not inspire me with confidence at all.

The next GP I saw was a very popular lady, and for good reason. I have never encountered such a friendly, compassionate doctor who was so willing to co-operate. She immediately referred me to Neurology to rule out MS and to check for possible pituitary damage after a head injury some years ago, and to Rheumatology to rule out Rheumatoid Arthritis and Sjogren’s, and with the promise of more referrals to come. Sadly, this wonderful doctor went on maternity leave the next week, so I will not see her again for a year or more.

Today I saw a third GP, who I assume was a locum filling in for the maternity leave. I had prepared a very thorough and detailed letter explaining my case and some of the things I wanted testing and why. This GP read the letter and immediately picked it apart dismissively, becoming increasingly rude and patronising, telling me that I shouldn’t be resistant to the ME & Fibro diagnosis, and that I appeared to be “angry for some reason”. It felt as though I had gone back ten years. I left her office in tears.

I am actually too exhausted from crying to go into detail about what she said and how upset and angry I am. But I can tell you that I feel more desperate than I have ever felt.

The previous blood tests for TSH (computer) says “no” so without an intelligent operator, I am faced with a brick wall. She actually said to me “some conditions can’t be helped“.

How is that possibly acceptable?

And I really just don’t know where to turn.

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5 responses to “Fob-off Diagnosis (again)

  1. I empathize with your situation, as I have been there with bad doctors who think the patient doesn’t know anything and don’t listen. Since you reference seeing GPs I’m assuming you live in the UK. PLEASE follow through with a reheumatologist and ask about treatment with low dose naltrexone (aka LDN). It is better know in the UK than in the US, but I have been researching it and my rheumatologist thinks it is a good treatment for me so I’m seeing my pain management doctor tomorrow and keeping my fingers crossed. Ask your doctor(s) about LDN; if they are unfamiliar with it, give them information on it. In addition to videos on YouTube that explain how it works, and groups on Facebook, there are two primary sites for information: http://www.lowdosenaltrexone.org and http://www.ldnresearchtrust.org.

    Liked by 1 person

  2. Ah there is nothing worse than doctors like that. My GP since childhood refused to diagnose me with M.E/CFS, kept telling me to exercise more and relax. I ended up moving towns and tried my luck with a new GP and got a good one. She is young and admitted she is certainly no expert but she has been marvellous. Made a lot of referrals, listens to me, makes me laugh, sympathizes with me and most of all, treats me like a human being. Im sorry for your shitty experience, and I hope you can find someone decent soon xo

    Liked by 1 person

  3. This sounds very frustrating. I thought you may be interested to learn that while CFS is a diagnosis of exclusions, there are objective, measurable abnormalities in ME. Here is more information (not my own) on that if you are interested.

    A Blog Post
    http://documentingme.net/2014/01/31/me-vs-cfs-theyre-not-the-same/

    More Info on Differences
    http://www.hfme.org/comparisonchart.htm
    http://www.hfme.org/misdiagnosis.htm

    Like

    • Thank-you, that is interesting. Unfortunately, the NHS has chosen to ignore the WHO and instead uses its own ‘NICE’ guidelines which don’t distinguish between ME and CFS. I hope that will change soon for the better.

      Like

    • I just read through those articles and it makes me want to cry, because NHS doctors don’t do any of the testing necessary to make a confirmed diagnosis of ME, and I am pretty sure that, if they had bothered to do so when I first got ill, the last ten+ years of my life would have been very different. I am fighting now for exactly the tests that they should have done in the first place.

      Like

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