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Spreading Sensory Peripheral Neuropathy - What next?
Neuropathy | Last Active: Jun 11, 2022 | Replies (21)Comment receiving replies
Has anybody used this grid as a guide when working with your neurologist to determine the underlying cause of the SFN and to see if any of the causes are treatable? I am trying to put together a tool to assist me in my understanding of my symptoms, diagnosis, and treatment?
https://neuropathycommons.org/sites/default/files/Tests%20SFPN%20causes%2011-07-17.pdfDr. Oaklander, out of Boston Mass General, authored the piece. Has anyone gone to Boston for treatment with her or her team?
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I have had a second opinion workup with Dr. Amanda Guidon, a neurologist at Massachusetts General, with offices at 165 Cambridge St., in Boston. She has worked with my primary neurologist, Dr. Kara Anne Stavros in Rhode Island at Brown Neurology in Providence. I had mentioned Dr. Oaklander to Dr. Stavros, but she thought Dr. Guidon would be a better fit, based on the tests I had already had. Both doctors have settled on an autoimmune reaction to either surgery. Anesthesia, infection or medication. Good news is that autoimmune opens up immunoglobulin infusions as a treatment. I have completed four out of six cycles and feel more strength in my legs. I also am going to Aquatherapy once a week, with a goal of eventually swimming again.
I hope this information is helpful for you.