Treatment Journey

The Neuropathy Chronicles 2.0

The Neuropathy Chronicles 2.0

You may remember from The Neuropathy Chronicles how we managed to tame the burning foot pain that is so familiar to Superficial Siderosis patients. Two years have passed, and TCM is still the winner. We saw firsthand how true this was during early spring when the electrical system controlling Gary’s heart (more on this later) decided to join the party.

Complications led to pulmonary embolisms in the five lobes of his lungs and long-term coagulation therapy. In addition, the TCM herbal blend Gary uses had already stumped two VA pharmacists. As a result, he cycled off his TCM herbal blend for neuropathy pain management while in the hospital. At the same time, they researched possible medication conflicts with anticoagulants and were asked to stay off them temporarily.

Hello Pain

Fast-forward two months, and here comes the tingling. Pretty soon, it progressed to full-fledged burning. The third VA pharmacy could never find any negative information other than one of the herbs had a reported anticoagulant effect, so they let him resume his Corydalis blend with the understanding the co-ag clinic would be monitoring him closely.

TCM herbal blends work differently than commercial pharmaceutical medications. It may take weeks 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. Once Gary resumed his daily use, the burning retreated once again.

Cold Hands Warm Heart

Peripheral neuropathy describes damage to the peripheral nervous system, motor, sensory, or autonomic nerves which move information from the brain and spinal cord to every other part of the body.

Burning foot pain is just a small part of dealing with peripheral neuropathy. The progression of Superficial Siderosis will touch everyone differently depending on the nerve involvement from your spinal cord.

Gary has hit the trifecta. His last neurological exam showed decreased reflexes in his upper body, and he often experiences severe muscle cramps and twitching. In addition, the fine motor skills of his hands are classified as severely impaired.

His sensory nerves often cause his hands and feet to feel ice cold. A pinprick test revealed a diminished sense of pain. He has reduced reflex response in his upper extremities. Gary stubbed his big toe hard enough the toenail stood upright. He didn’t feel a thing.

Gary developed what doctors thought was Atrial Ventricular Nodal Reentry Tachycardia (AVNRT). His cardiac testing shows no blockages, minimal valve problems due to aging, and other small physical changes. He had been on blood pressure medication for years with excellent results. Now his blood pressure bounces from high to low to normal. Eating either solids or liquids sometimes results in choking, and he can now not tolerate being outside in the heat of East Texas summers for long.

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Rori Daniel

Living With Superficial Siderosis began as a way to keep family and acquaintances updated after my husband Gary was diagnosed with Superficial siderosis in 2014. In 2019, became a partner in the Superficial Siderosis Research Alliance. Together our alliance has expanded into research, advocacy, and patient education. Rori Daniel, Editor,

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