Not enough research has been done on Neuropathy. I firmly believe raising awareness should be top priority for this illness. As a marketer and Politician I have the knowledge and connection to offer the association free of charge.
I hope I can contribute toward grants, fundraising and new marketing and the promotion to help myself and the thousands of Canadian/USA who suffer silently without any help in the foreseeable future. However, others with similar status to join me.
Written by
Michael1948
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Yes PN is the neglected illness , and only a few options are given with the tiring drug gabepenten as a poor renedy. Holistic treatments should be scrutinized as a valid option.
I absolutely agree although I’m in Scotland, UK so I’m hoping that international research will help. But I think, ultimately, neurologists are the problem (for me anyhow) because they don’t know enough about the various conditions that can trigger neuropathy. And my experience has been that for many neurologists, what they don’t understand they class as functional and hand out antideprssants and anticonvulants like sweeties in attempt to mask rather than modify the neuropathy.
In my case small fibre neuropathy has turned my life upside down and, although my neurologist knows the underlying cause (Sjögren’s Disease) and knows I cannot tolerate Gabapentin or others of this ilk - she will not contemplate that mine is progressing now from a few years of awful pain eberywhere to whole body numbness and vibration . Instead she’s now saying that she is concerned that I have “heightened health awareness”. But the numbness has caused me to be so off balance that I have ataxia and falls and cannot cross roads safely due to being unable to turn my head to look for moving vehicles. Nor can I stand still for longer than 20 seconds without crumpling like a pack of cards!
No one here in the UK seems remotely interested in PN. Really, after doing the rounds of various consultants I ended up being sent to the Falls Clinic at the local hospital (a complete waste of time), and the consultant told me not to bother doing any exercises as it wouldn't help and sent me away. I'm so tired: always falling downstairs or in the road with agonising results and no intelligent help to be had.
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