my sister was diabetic, she started with abdominal pains...

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my sister was diabetic, she started with abdominal pains , later leading to a urine problem. after 4 years of uncontrolable pain she died of autonomic neuropathy. she suffered so much she spent the last year of her life in hospital, we would approach the hospital staff for some answers to her condition but we were given none, aparently there was only 1 other case in england to ever have this condition, she was on so much medication, the hospital did not even know what ward to put her on, she would rock and shake uncontrolably. she complained of pains in her back , bowel and bladder areas.she was given botox injections in her stomach as this controlled the nerves thus easing her pain. she had severe acid reflux, at times she looked demented, as if she was mentally ill. she would cry out for help ,but we could not help her, many times she would have to be sedated.she looked like a cancer patient, she died at home november 2005.she was 37 years old. many people take diabetes with a pinch of salt . diabetes should be taken very seriously life is so important, i never got my answers to her death from doctors or hospital staff it was as though they could not explain it, it was the internet i turned to, sites like this one but i still find it hard understanding the whole complications of autonomic neuropathy

[i:2a3d22777c]This message was automatically imported from the original Patient Experience[/i:2a3d22777c]

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3 Replies

  • Posted

    So sad, I am sorry for your loss. I don't have diabetes, but I do have autonomic neuropathy. I'm sure more could have been done, but this is another condition that many medics are clueless about.

    This should not have happened.

  • Posted

    Did your sister have Botox before her illness or was it only after her illness started
  • Posted

    Hello. I am so sorry for your loss. It must have been heartbreaking for you and your family. I have autonomic neuropathy. Have had it for four and a half years. Am on various medication for a number of symptoms which include severe back stomach and head pain. Hyperhidrosis, hyperthermia hypothermia. Problems with my bladder and bowels. I have a brain tumour, lipoma. Generalized dysesthesia. My eyes feel as if they are permanently wet and my eyelids feel as if they have been glued down half over my eyes. I feel as if I am wearing a full face crash helmet on my head and the noise inside my head is dreadful, sounds as if I have a dozen steam trains inside it. One side of my head and body can be freezing while the other half is boiling hot. That is only some of my symptoms. In February I had an infusion of lidocaine for the pain but so far it has not helped. Now I have just been left to get on with it which is very difficult as it does affect you psychologically as well as mentally. 

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