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…

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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, Bulbocapnine, Leonticine, Corybulbine-3 and Tetrahydro Columbamine. Corydalis has been used as an analgesic and antispasmodic to reduce pain. THP acts on the central nervous system to decrease nerve pain, and researchers noted that the herb was effective in reducing nerve pain in Seventy-eight percent of the patients tested. TCM practitioners…

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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 become accustomed to getting bombarded by a nerve that never seems to turn off and makes adjustments to account for it. So, even once the nerve manages to stop firing, the spinal cord has become so used to sending that signal that it will take over and keep doing it…

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Cerebellar Ataxia and Ayurvedic Therapy Possibilities

MRI 2014

Exploring Alternative Medicine   Ataxia was once referred to as the “Drunken Sailor” syndrome a few hundred years ago. The gait problems that arrive with the symptoms from superficial siderosis are just one of many that fall under the authority of ataxia. We can relate big time. Gait, balance, hand coordination, vision, speech, swallowing, cognitive, and fatigue are related to cerebellar ataxia that develops because of cerebral atrophy. Gary’s atrophy was considered mild in 2014 but has still dropped a variety of symptoms directly in our lap. Vision issues have made driving no longer possible. Speech, swallowing, and coordination problems are intensified by fatigue. Cognitive issues appear to be evening out some as of late so being the glass half full part of this partnership I’m going to chalk that up to some positive effect of the green tea. As for mood, well we’ve been married 37 years, so we deal with that in our way. We hope to avoid going down the overmedicated prescription road. That’s not to say if a conventional western medication turns out to be something necessary we’d turn away from it. Still, we’re hoping to explore any natural or alternative medicine that might offer some relief. One of these…

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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-catergories. At least one or two of the big three signs will present in more than 50% of patients. It is rare for one individual to be affected by every one of these conditions. A few of the following symptoms are very rare. There has been some debate about tremors. Tremors are a clinical symptom of some types of ataxia but some physicians disagree they are Superficial Sidserosis related. It has been suggested they may be associated with unrelated medical conditions.   Clinical Symptom Glossary Anisocoria Anosmia Ataxia Body Pain Bowel Function Cerebellar Dysarthria Craniospinal Hypotension Dementia Dental Pain Depression Diplopia Dysphagia Fatigue Gait Headache Hyperreflexia Mild Cognitive Impairment Motor Skills Impairment Myelopathy Nerve Palsies Neurological reserve Nystagmus Peripheral Neuropathy Phantosmia Sciatica Sensorineural Hearing Loss Sensory Impairment Sexual Dysfunction, Male Short Term Memory Loss Spasticity Tinnitus Urinary Problems

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