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Sensory Ganglionopathy help!!

Neuropathy | Last Active: Aug 15 5:06pm | Replies (24)

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@eis

Great attitude. As a physical therapist who was diagnosed with idiopathic sensory ganglionopathy 8 years ago, I find myself perhaps a medical mess but clinically fascinating! Even after 8 years, I find that I can make functional improvement. There are so many workarounds, we just have to be creative.

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Replies to "Great attitude. As a physical therapist who was diagnosed with idiopathic sensory ganglionopathy 8 years ago,..."

You've had it for 8 years. Wow. Being a physical therapist, do you have any do's or don'ts as far as it comes to exercises? I would like to pick your brain metaphorically of course. I have now had this for 2 years and all I've been told it's a condition that will never go away. That the nerves can never be rejuvenated. I was on gabapentin but got taken off and that helped a lot with the equilibrium issues I have. But the balance being off will put me in a walker the rest of my life. They now have me on savella and it helps take away the pain. Just a little bit. Welcome to the ganglionopathy club. There are other people in this thread. They have it just like us. In the future I want to start a Facebook page to help others.