Living In Upside Down World

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I thought we were ready. Very early in March, I had a conversation with two neurologists in Italy. They had both seen patients with Superficial siderosis, so we were making a connection to share information. One of them commented we had no idea of what was heading here to the U.S. I made a mental note to do a little preparation because that’s my nature.

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Surviving The Neurology Ride

Surviving The Neurology Ride

A visit to the neurologist often reminds me of stepping up to ride the tallest most twisty ride in the park. You start off slowly inching along, anticipating a thrilling experience with just a hint of fear. Then the bottom falls away and down you go. Sometimes the ride is exciting, everything you expected. Often the anticipation and hype don’t live up to your expectations. Do We Expect Too Much? Gary just finished with his last neurology visit for this year. We’ve had an outstanding year as far as finding solutions to some of his problems. We’re lucky to have been assigned an indulgent doctor who listens to my oft-times long-winded list of concerns. I am aware I can be a high maintenance caregiver at times, but without constant prompting, Gary often rambles through triage sessions. Why does it always feel like it’s never enough? Superficial siderosis is a slowly

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Summertime Neurology Blues

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  We hit the road last week for another trek to see the neurologist. We usually enjoy these long rides up into the heart of Arkansas, but it seems we can’t escape the unplanned detours lately. We headed out with our long list of questions and a feeling of excitement. The latest MRI results should be ready for viewing just in time for our visit. In our last neurology update, I mentioned while Gary receives excellent care from his neurology department they do use residents and medical students from the University of Arkansas Medical Center. Every visit we can look forward to explaining Superficial Siderosis in detail to a new group of wide-eyed young doctors. I will say it’s encouraging to see how engaged they are. Writing notes and paying considerable attention to every detail we tell them. We began our visit detailing the changes Gary has been experiencing since his

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Neurology Roadtrip

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We made our trip to Gary’s regular neurology appointment this week seeking answers to his headaches. Since he left the private healthcare sector last January and entered the VA system road trips are the rule. His PCP, blood testing lab and primary audiologist are in a clinic in Texas. The hematologist, regular cardiologist, back-up audiologist, dermatologist, and coumadin clinic nurse are all in Louisiana. Gary travels to Arkansas for his electrophysiology cardiologist, neuropsychologist, and neurology. We may be living a Willie Nelson song, but you can’t say the VA is not thorough.We went to neurology hoping there would be some headway towards relief for Gary’s headache pain. He never sees the same resident or neurologist, so we are in constant new patient mode.   The VA does excel in keeping detailed notes from every visit, so it’s easy to tell if the resident of the day has done their homework.

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The Neuropathy Chronicles 2.0

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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

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Testing, Testing, Hope

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The Whirlwind Test Tour We’ve been doing the whirlwind testing tour with Gary’s many specialists these past few weeks. Not only was it time for his quarterly neurology follow-up but we found ourselves eagerly waiting for the first MRI and hearing tests since Gary began Ferriprox this past year. Our health insurance network is being changed from a PPO to a HMO next year, so we suffered few weeks of panic after we received notice from BCBS of Texas. HMO networks are not popular with doctors in our rural area. Seven specialists and one PCP currently provide care for Gary, and not one was in an HMO network. UPDATE: Every specialist but the neurologist joined the HMO network before the January deadline. First Stop Our first stop was the audiologist. Dr. Lee had mailed us a copy of a  magazine article this summer from one of her professional publications. It

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Quarterly Neurology Follow-Up

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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

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