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August 8th - What is the one thing about suffering with severe ME that the world needs to know?
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No Further investigations

Discussion in 'ME/CFS Doctors' started by carol, Aug 6, 2011.

  1. carol

    carol

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    Have you had difficulty getting your GP to perform tests after you have been diagnosed with me/cfs. Have you had to pay to get the tests done only to find you were suffering from another illness alongside the ME eg. diabetes etc. Have you, like me, found that you were wrongly diagnosed with me/cfs only to have to pay to find out I had fentanyl toxicity and bodywide irreversable severe ankylosing spondylosis. The ME Assoc have said that they are aware of the problems with poor diagnosing skills within the NHS when diagnosing me/cfs and have tried to address the problem, but appear to have had no reports of referrals and tests being denied to patients. Hence this thread. Is there a problem with reluctance to investigate after a diagnosis of me/cfs, or was it a one off with my GP's. If there is evidence of a problem I believe it needs to be addressed, shouted about, changed!
  2. Enid

    Enid Senior Member

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    I suppose in way I was just a little lucky as ME was never discussed in the early days - obviously ill with clear neurological signs so usual basic tests done and neurological scans (MRI - high spots in the brain). I did have to scream (well push my GP hard) to receive neurontin - great help. As soon as I mentioned ME my neurologist said "sorry can't aid - they think it's viral - find someone who knows". My GP is only treating hypothyroidism and osteoporosis/arthritis (reactive apparently). As the usual ME symptoms are all present I have to try to understand and self treat without any of the special testings going on overseas. My own KdeM high scores brought no understanding or treatment from my GP. One just gives up with them. Best help on GI problems came from my Dentist - high dose amoxcillan for teeth extractions/infections - did wonders for my gut too.

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