← Return to Camptocormia (bent spine syndrome or BSS): Looking for others

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@axmyc

Hello, John.
In my case, camptocormia is a result of Axial Myopathy. Several years ago, I struggled with erect posture. It became difficult to walk upright, while carrying the lightest things. This worsened over time. I saw several specialists, one who was sure I had Myasthenia Gravis. After three months on prednisone, with no improvement & an unpleasant response to the drug, I obtained a second opinion. The second doctor suspected it was Axial Myopathy. After the results of a second MRI were evaluated, the definitive diagnosis was Axial Myopathy. I was fitted for a custom brace, but it was so uncomfortable I couldn't use it. I've found that physical therapy & aquatic exercise has been helpful, as they strengthen the muscles that are still functioning. I walk in public with trekking poles, which encourage upright posture...but I tend not to use them at home when scurrying around. If you walk in a bent forward position it would really be helpful to you if you saw a neurologist to rule out Myasthenia Gravis or Parkinson's or any other conditions for your peace of mind. I feel as if I'm still productive despite my posture.

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Replies to "Hello, John. In my case, camptocormia is a result of Axial Myopathy. Several years ago, I..."

Thank you for suggestions @axmyc. I did do a stent with PT when I was having lower back pain and my Mayo primary care doc sent me to PT. I also have trekking poles and they do help me walk but unfortunately I don't go walking much other than pushing a shopping cart at the grocery store which does let me walk a lot. I've thought about trying a weighted back pack and using it for walking to see if it might help with the posture but I probably need to discuss with my doctor first.