Hi! I have been diagnosed with axonal sensory motor neurophy. I also have osteoporosis — Scope | Disability forum
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Hi! I have been diagnosed with axonal sensory motor neurophy. I also have osteoporosis

Hi I have been diagnosed with axonal sensory motor neurophy , unfortunately I also have osteoporosis. I have numb toes, prickling, burning and pain, the pain is now chronic. I cannot walk far without becoming very tired and if I try to turn around I loose my balance. I cannot get much information on this condition the neurologist informing me there is no treatment, so in other words go away. 

I take low dose pregablin and low dose amitriptyline. I cannot get much information on this condition and feel very lonely with nobody to compare notes. I have started to get pain in all my joints but cannot get any information to find out if this is normal.
If there is anyone with a similar condition I would love to have more information 

Comments

  • janer1967
    janer1967 Member Posts: 16,329 Disability Gamechanger
    Hi and welcome 

    Sorry I'm not familiar with your conditions just wanted to welcome you 

    Hopefully others will be able to help 
  • starling
    starling Member Posts: 2 Listener
    Thank you very much for welcoming me to the group, I will keep my fingers crossed that there is somebody else with this or a similar condition. 
  • Caz_Alumni
    Caz_Alumni Scope alumni Posts: 621 Pioneering
    First of all, a big warm welcome to the community! It's good to have you with us @starling. :smiley:

    Yes, fingers crossed that there will be other people on the community who are more familiar with axonal sensory motor neuropathy, and who might be able to share some of their experiences and advice with you. 

    Plus, we will probably have lots of members who will be able to empathise with how you're feeling about things in general, even if they don't have quite the same symptoms as you. 

    Anyway, I'll leave you to explore the community and get chatting to some of our members. Please do just give us a shout if you would like any help finding your way around or if you have any questions for us :smile:
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