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 off his neuropathy formula in the hospital while they researched medication conflicts and stayed off them. Jump ahead two months and here comes the tingling. Pretty soon it progressed to full-fledged burning. The VA pharmacy was never able to find any negative information so they let him resume his Corydalis Relaxe™ with the understanding they would be monitoring him closely. TCM herbal blends work differently than commercial pharmaceutical medications. It takes, on average, two months for your body to reach a therapeutic level. TCM blends are not a quick fix. You can’t expect instant relief, but patience pays off. The…

Continue reading….

Eye on Nystagmus

Eye I. By Thomas Tolkien

  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 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 funny consequences. Nystagmus is a vision condition in which the eyes make repetitive, uncontrolled movements, often resulting inreduced vision. These involuntary eye movements can occur from side to side, up and down, or in a circular pattern. As a result, both eyes are unable to hold steady Nystagmus can be inherited and appear in early childhood or develop later in life due to an accident or illness. Generally, nystagmus is a symptom of some other underlying eye or medical problem. However, the exact cause is often unknown. Persons with nystagmus may experience reduced visual acuity. They may also have problems with depth perception that can affect their…

Continue reading….

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 come to in regards to searching for an active bleed? The Statin Question Our neurologist agreed pretty quickly we had a valid concern about the ten-year history of statin use. She reviewed cardiac health history. His parents had both been treated long-term for high cholesterol. Gary’s number had a history of being high at times; it was not at a level now that would suggest he was in a high-risk category. Blood pressure was stable. Plus there was the bonus of the chelation diet regimen. We avoid all red and organ meat five days a week and load up on the…

Continue reading….

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, we know the diagnosis is Bilateral Sensorineural Hearing Loss. Hemosiderin is killing the function of Gary’s vestibulocochlear nerve (eighth cranial). This nerve handles sound transmission and equilibrium information moving between the brain and inner ear. The latest hearing test in December 2014 shows a decline to 30% functional hearing.   Isolation Watching television was becoming impossible without the aid of closed-captioning, movies theaters were hit or miss; We had begun to speak looking directly at each other or understanding was garbled. Cell phones were becoming an exercise in frustration. But the worst was being surrounded by people. Imagine being in…

Continue reading….