The Results Are In

Ferriprox

“Does Deferiprone provide a clinical benefit to the superficial siderosis patient?”   If you remember, the April 2017 edition of The Neurology Journal gave us an early peek at what the study findings might be in the final revision of Two-year Observational Study Of Deferiprone In Superficial Siderosis¹. The study was released this past December 28th, and the results have been published. This blog post is our cliff note version of the study, keeping in mind, we’re not medical researchers or doctors.   Initial recruitment included 48 participants.   Nine withdrew from the study because their insurance wouldn’t cover the off-label use of Ferriprox and one for other reasons. 38 people began the investigation, and over the course, two dropped out because of neutropenia concerns, four dropped for cost issues and one left for unrelated health reasons. 31 people completed the study. Each participant submitted a current neurological exam, a…

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A New Chapter For 2018

Living with superficial siderosis website

Honestly, I’m glad to see the back of 2017 Have you ever felt like the proverbial herd of turtles trying to run through peanut butter? Gary’s health gave our family a few frightening moments the first half of 2017. Reality hits when you’re waiting alone in an ER, 200 miles from home. One step forward five steps back, so we’re ready to move forward and welcome a new chapter for 2018. I hope you’ve had a chance to check out our new Tidbits And News page. We needed an area to post bits of news we run across or research topics. It’s an understatement to say I read a lot, so it’s always exciting to stumble across a story in mainstream media about a fellow SS’er. I’ve added a new one today.  Speaking of a new chapter One blog topic I hope to cover this year is nanotechnology. There is interesting research…

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The Neuropathy Chronicles

Pain of neuropathy

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 to sleep. A short trial run of the prescription medication Lyrica was discontinued due to some very off-putting side effects. We were trying to avoid the opiate road for as long as possible, so in August we turned to Traditional Chinese Medicine (TCM). A tincture made from boiled rhizomes of the Corydalis Yanhusuo plant has been used to treat pain since the eighth century by TCM practitioners. Modern day researchers have identified twenty alkaloids, including tetrahydropalmatine (THP), which acts as a sedative and analgesic, as well as dl-Tetrahydropalmatine, Corydaline, Protopine, Tetrahydrocortisone,…

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Superficial Siderosis Webinar Transcript

superficial siderosis webinar transcript

Superficial Siderosis Webinar Transcript Presented by Dr. Michael Levy   To view the recorded webinar you may watch here Download a copy of the transcript and slides  here Click on the individual slide to view larger   Hi, my name is Dr. Michael Levy. I’m an assistant professor at Johns Hopkins University in Baltimore and a neurologist. I see patients with Superficial Siderosis of the nervous system. This webinar was really a joint effort with my patients on Facebook, who recruited me to present a twenty to thirty minute overview about Superficial Siderosis. Today I’ll go through just kind of the broad strokes of the pathophysiology of the disease, at least the parts we understand. We’ll work out the treatment options that are available. First, what is Superficial Siderosis? In broad brush strokes, Superficial Siderosis is an iron overload condition of the brain and spinal cord. Patients with Superficial Siderosis…

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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 until the hand gets near the flame on the stove. However, an injured nerve is like a broken telephone that rings when no one is calling (burning) and is unable to get a dial tone when you need to make a call (numbness). Even when it has nothing of importance to say to the brain, the nerves will send a message and a confused message at that. The “confused” message can be interpreted by the brain as pain or strange sensations like “pins and needles.” Over time, the spinal cord can…

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Benefits of Green Tea

Green tea for memory

  Green tea has enjoyed such a surge in popularity that more than a few people are skeptical. Every healthy living blog touts the benefits of green tea for everything from cardiovascular health, diabetes or weight loss. That will raise an eyebrow or two, but when you do some research, you may find yourself changing your mind. One of the more worrying symptoms of superficial siderosis is cognitive impairment. 20% of SS patients will experience early onset dementia. That’s not an enormous number considering that’s about one in five (of 270 diagnosed cases) but when you might be one of the ill-fated headed in that direction the number gets BIG real fast. Small signs that something was off showed gradually but began increasing last winter. Gary can remember the phone number and address of every house he has lived in but forgets the daily meds he’s been taking for years.…

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