The Neuropathy Chronicles 2.0

Peripheral Neuropathy Symptoms   Hello Pain, My Old Friend You might remember from one of our earlier posts, The Neuropathy Chronicles, how we managed to tame the burning foot pain that is so familiar to Superficial Siderosis patients. Two years later TCM is still the winner. We saw for ourselves how true this was during early spring when the electrical system of Gary’s heart (more on this later) decided to join the party. Complications led to pulmonary embolisms in five lobes of his lungs and long-term coagulation therapy. The TCM herbal blend Gary uses stumped the VA pharmacists. He cycled…

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Eye on Nystagmus

Eye I. By Thomas Tolkien

Eye on Nystagmus 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. I’m always disappointed when a doctor comes in talking away, and I think, wow, that’s not even close to how I imagined it. Nystagmus. This time the neurologist cleared up the pronunciation question: noun, nys·tag·mus \nis-ˈtag-məs\:  a rapid involuntary oscillation of the eyeballs. A curious little word with some not so…

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Quarterly Neurology Follow-Up

Quarterly Neurology Follow-Up The New Normal By the time we went to our quarterly neurology follow-up we had a pretty good list of questions. The cholesterol medication was a big one. What kinds of exercises could we safely add to the walking? Did we need to see a Neuroopthamoligist instead of our ophthalmologist? What alternatives, besides prescription medications, were there for the neuropathy pain, body, and joint pain? The hand and trigger finger problems had become extreme. Some days it is impossible to hold a fork or use a knife. Was this even SS related? What decision had the doctor…

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A Very Good Day

Sensorneural Hearing Loss

 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 learn to live with it. Our next ENT was a two-hour drive from home. Dr. Garb was very personable and seemed genuinely interested. He ordered an audiogram so we could have a baseline level but still no answers. Today, of course,…

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