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Peripheral Neuropathy

  • By Joanna Bodner Keymaster

    Want to connect with others who experience Peripheral Neuropathy? Please share your comments, feedback & experiences here.

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  • By pwrnapper

    Hi Joanna: As a Chronic Peripheral Neuropathy sufferer for 15 years now I’ve tried the majority of the meds and treatments out there including a Spinal Cord Stimulator. Does anyone know of any new developments in the pipeline or in trails that can offer us Chronic PN sufferers some hope of relief? As we all know there is currently no cure for this disabling illness and the current meds on the market provide only minimal relief, all with terrible side effects. Since our bodies becomes tolerant to these meds, either taking a higher dose is needed resulting in increased side effects or switching to an alternative treatment. Neither choice is a good one. As a Chronic Migraine and Cluster Headache sufferer new products like the CGRP antagonists, i.e. Aimovig, which I currently use, gives us hope however as “Guinea pigs” we are starting to report negative effects that can be worse than the initial disease. While it is nice to see the Pharma companies developing these new products the time-to-market is quite long and speedy trials do not discover the sometimes terrible long term effects. Hopefully Pharma companies will recognize that there are 20 million people suffering from this PN in the USA alone, and we need help ASAP.

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  • By pwrnapper

    Hi Joanna: I want to thank you again for setting up a Peripheral Neuropathy page over a year ago. Unfortunately other than my original post there has been NO ACTIVITY on this page. Probably a matter of communications and getting this page out to other PN sufferers of which there are millions. Any ideas on how to reach more people to get some activity? No wonder I am a “pwrnapper”.

    Pwrnapper

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  • By Dana

    Pwrnapper
    When was the last time you looked into PNS? There are new things out there, I guess depending on where you are and what information your doctors have available to them. Where are you located?

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    • By pwrnapper

      Hi Dana: I’m in a suburb of Chicago so close to the best hospitals and doctors. What type of PNS are you seeing out there? Any improvements should help us PN sufferers.

      pwrnapper

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