The Neuropathy Chronicles

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Neuropathy: Burn Me, Stab Me, Shoot Me We touched on our search for some relief from peripheral neuropathy in our August blog post, QUARTERLY NEUROLOGY FOLLOW-UP. You’ll find an explanation of the type of neuropathic pain connected with Superficial Siderosis in MANAGING NEUROPATHIC PAIN. Sharp jolting stabs of burning pain across one or both feet was making it impossible…

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Punching Through the Brain Fog

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Brain Fog and Stress Brain Fog  Stress  Anxiety  Depression We’ve both been fighting a definite lack of focus.The last few months have not only been busy but very stressful for us. We headed into the summer months not giving much thought to the immediate future. Health wise things were leveling out so we felt we could focus on refining…

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Eye on Nystagmus

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  We were sitting in the exam room at our ophthalmologist yesterday and I wondered why is it so many of the SS related conditions seem impossible to pronounce without a medical degree? Silly I know, but I never take the time to find what the actual pronunciation is. The doctor comes in talking away and I think, wow, that’s not even…

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Rethinking Cholesterol Medication

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Rethinking Statin Use   Are you a long-term user of popular statin drugs on the market? Studies are convincing it’s time to rethink cholesterol medication use if you’re in a high-risk, neurodegenerative patient group. If you are already fighting nerve degeneration, there is evidence your cholesterol medication may be contributing to peripheral nervous system damage. 25% of the adult…

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Managing Neuropathic Pain

Hello, Switchboard I’ve Been Disconnected   One of the better explanations I found during our search for ways to manage neuropathic pain associated with Superficial Siderosis was a quote from Dr. Corey W. Hunter¹. “Typically, a healthy nerve will only send a signal when it is stimulated, e.g., a nerve in the hand that senses temperature will stay quiet…

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Whole New Ballgame: ReSound Linx²

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The two-week update on the ReSound Linx² hearing aids The question most asked, “Do you still like the new hearing aids?” Short answer, yes. But there are so many features we’ve just barely scratched the surface. Classified as Smart Hearing Aids, they can be set to work in tandem with your smartphone with an app you download. This app allows your…

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Living On Tilt: Ataxia

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Dealing with ataxia, gait and impaired balance   50% of Superficial Siderosis patients will have to learn to live their lives permanently on tilt. Ataxia related gait and balance issues were a late addition to our list of symptoms, but here they are. In early 2013 random bouts of nausea and vertigo would hit with no warning. Walking would…

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A Very Good Day

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 Bilateral Sensorineural Hearing Loss Phantom smells and worsening hearing were the first inklings something was wrong. Our first ENT (Ear, Nose & Throat Specialist) decided the smell problems were the result of some past sinus infection. Gary’s hearing loss issues were probably environmental from his military service as a jet engine mechanic and simple aging. The doctor’s advice was to…

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Experiencing Food as Texture: Anosmia

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LEARNING TO LOVE THE CRUNCH   None of the symptoms you can have with Superficial Siderosis is a walk in the park, but one of the most gloomy is anosmia. Living with a sense of smell that has been fading over the last ten years was bad enough but now, it’s completely gone. Very handy if you’re asked to…

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Superficial Siderosis Symptoms

Superficial Siderosis Symptoms List   There are more than 30 recognized clinical Superficial Siderosis symptoms. Sensorineural Hearing Loss, Ataxia, and Myelopathy are considered to be the three classic signs. We have used these as parent categories¹ for ease of sorting our glossary terms into sub-categories. At least one or two of the big three signs will present in more…

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