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Misdiagnosis Please help!!

Hello, I have registered here as I am desperately seeking information that will get me back to being mobile and not reliant on painkillers. My problem started in September, very severe abdominal pain and swelling (gone from flat tummy to looking about 5 months pregnant), and lower back ache. I am a 33 year old mum of two so have accepted a degree of lower back pain for years. Pain is all around my torso including the flanks. Blood count, ultrasound, and abdominal X-rays were all normal, but agonising pain continued. Tried paracetamol, ibuprofen, naproxen, tramadol, Codeine and dyhydrocodeine. Nothing touched my pain. Sevrodol helped a bit but not much. My back ache seemed to spread from mid torso right down to my feet. Standing for more than a couple of minutes or trying to walk normally made the muscles in my bum and thighs contract and shake, and I developed a tremor in my legs, they would shake incessantly. Then tried amitriptylene. When this dose was increased to 50mg it helped a lot of the abdominal pain. When it went up to 75mg the visible shaking in my legs stopped and was just left with an awful tight feeling in my muscles when I stand or walk. Have had a few episodes of shaking hands. My muscles have got weaker and the back pain is horrible. I am now using a wheelchair for about 50% of time at home, and whenever I have to go out or walk any distance. My walk is more of a shuffle, and I am very slow and stiff.

Doc said X-rays showed sacriolitis, and two pointed bone spurs on the sitz bones, they look like fang teeth! He also said there were heavy calcium deposits on my thoracic spine, and some degeneration or other issue with a disc. He ordered MRI for more detail. MRI report found small abdominal wall hernia that wouldn't account for my swollen abdomen and pain, and a "tiny disc protrusion at t8/9, touching the anterior aspect of the cord but not compressing it". Says no other abnormalities that could be causing this patients pain.

Following the MRI I received a letter saying after reviewing all scans and blood tests, by a diagnosis of exclusion I suspect you have some form or Chronic Fatigue Syndrome!!!

I can't believe they are going to fob me off with that B.S "diagnosis". He hasn't indicated any further tests or treatment. Am I supposed to continue taking amitriptylene @100mg and Sevrodol (morphine) and using a wheelchair for the rest of my life?! I haven't been able to work for four months, can barely manage my children and the home, with a lot of support, how can I accept nothing else can be done?

Have started accupuncture through another doc, and he has put me on Baclofen for the muscle rigidity. Can anyone offer any advice, or has anyone else had a similar progression of symptoms?


  • LizLiz Posts: 7,832
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    Liz, Spine-health Moderator

    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
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