My journey with peripheral polyneuropathy has probably lasted my lifetime. It made itself known along the way but by 2009 its whisper was clearly audible, by 2011 it was shouting, by 2012 it was screaming at me. But what on earth had caused this autonomic then sensory, then by 2013 even the start of motor neuropathies?
I was born to an alcoholic who had attempted (failed) abortion twice with Quinine so peripheral nerve damage right from the start may well have been probable. By six months old I had recurrent infections (later diagnosed as primary immune deficiencies) and a number of viruses that could have caused it. I may have inherited salt wasting from my father and certainly did inherit a collagen disorder from my mother. Did I have symptoms of autonomic, sensory or motor neuropathies in early childhood? Autonomic, certainly, sensory, on and off, motor, maybe, episodically at different times throughout my life.
The closest we came to understanding why my polyneuropathy got to the level its now at was the theory that my collagen disorder – Ehlers Danlos Syndrome – had played a part; that collagen protects myelin which protects peripheral nerves and mine is degenerating. Another specialist suggested my autonomic neuropathy had developed as a result of chemo. But being immune deficient all my life, I wondered if this also played a part, particularly as I’d had Chicken Pox, EBV and Herpes Simplex 1 (cold sore virus), all of which have been linked to peripheral neuropathies. And what of salt craving and my dramatic improvements when on high sodium intake? I knew chemo had tipped the balance and that Tomoxifen was implicated. But how to make sense of the puzzle, the fruit salad?
I could have accepted the word ‘idiopathic’ but maybe that’s just a word people have when they cannot find the ONE cause. But what if that’s because there actually were multiple, cumulative causes?
From the Oncologist diagnosing autonomic dysfunction during chemo, the sleep specialist diagnosing Mixed Apnea, to the cardiologist diagnosing Orthostatic Hypotention, to the Ehlers Danlos Specialist diagnosing EDS, to the rheumatologist diagnosing inflammatory tenosynovitis, to the Neurologist diagnosis small fibre neuropathy, slowly the answers came together. The final verdict went something like this…
Collagen protects the peripheral nerves, in an essential part of immune regulation and is an essential part of forming connectivity in the brain which related to information processing. As a person with the collagen disorder of Ehlers Danlos I may already have had some level of altered neuro-cognitive development, immune dysfunction and autonomic dysfunction all associated with this collagen disorder.
Estrogen replenishes collagen. As women get into their forties collagen decreases. Chemo damages collagen and results in menopause. Following chemo I was put on estrogen blockers. This kept me in menopause and reduced my ability to replenish damaged collagen. Part of my immune dysfunction is immune deficiencies and food intolerances. The immune deficiencies mean I struggle to fight off certain bugs, including HSV1 which can cause neuropathy. I’m also gluten intolerant and had returned to gluten in 2010 when the neuropathy began to diversify and worsen. I was on B6 but following chemo took a magnesium supplement that also had B6 so my daily total was 40mg. The daily RDA for B6 is 1.5mg with max of 40mg. Excess B6 can cause neuropathy and mine was found excessive. I went back off gluten, dropped B6 supplementation and increased Lysine and lost the sensory neuropathy. The stiffness and slowness with movement remained but was concluded to be part of the Ehlers Danlos Syndrome. The autonomic dysfunction also continued, again considered part of the Ehlers Danlos Syndrome.
I acknowledge Aboriginal and Torres Strait Islander people as the Traditional Owners of this country throughout Australia, and their connection to land and community.