Next course of action for undiagnosed polyneuropathy

Posted by dthomasc @dthomasc, Dec 19, 2023

I have spent the last ten months working with medical teams to determine the cause of my sudden neuropathy symptoms. As a healthy, active man in my early forties, the very sudden (within a couple of weeks) onset of sensory symptoms in my hands and feet was very scary. It took me about four months to get into the care of my primary neurologist. Since that time, I have been through large batteries of tests, from multiple MRIs, blood, urine, cerebral spinal fluid, and skin/tissue tests. Besides high amounts of protein in my spinal fluid (which is non-specific), all of the tests have been negative. It has been comforting to know that these tests have ruled out some very alarming and life-threatening conditions, but frustrating because I continue to live with the symptoms that I do (though better controlled with medication) without being able to address a cause. But what now? My primary neurologist recently referred me to another at OHSU (Portland, Oregon) who I have seen. He reevaluated me, reviewed all my lab work, and basically shrugged his shoulders and let me know that the cause of many of these polyneuropathies is often unknown. He had no additional tests to recommend for me, and told me I didn't need to make a follow-up appointment unless my symptoms worsened. My primary neurologist just concluded my last test without a positive result. He has referred me to yet another neurologist up at the University of Washington (Seattle), and I have been warned I might be waiting several months to get in. I find myself wondering if I am being stupid by continuing to pursue root cause, or whether I should only be focused on managing my symptoms. I haven't been able to find any correlation between lifestyle, diet, and my symptoms, and these meds make me so foggy. I don't really know what else to do.

Interested in more discussions like this? Go to the Neuropathy Support Group.

I have recently been diagnosed with large fiber sensorimotor Pollyneuropathy. I received very little information from the neurologist other than it could get worse. It could get better or it could stay the same. I’ve been left to just search on my own for more information. I’m glad I found this group. I’ve been using red light therapy on my feet and lower legs, and it has helped with my feet from feeling like they’re freezing all of the time. I stopped using it for a few days and my feet felt like ice cubes again. After two days of using it again they feel warm. I hope that will help the other sensations and strength too.
I haven’t heard much about autonomic nervous system with polyneuropathy. I have periods of dizziness, I can take a short walk with the dogs and come back, feeling dizzy and exhausted. Even though my strength overall is still good. I have started having hot flashes which I’ve been gone for 20 years. I would like to know more about the autonomic nervous system system affect and if there’s anything I can do about it. Also, I was wondering if Covid could be a cause.

REPLY
Profile picture for abbyrose @abbyrose

I have recently been diagnosed with large fiber sensorimotor Pollyneuropathy. I received very little information from the neurologist other than it could get worse. It could get better or it could stay the same. I’ve been left to just search on my own for more information. I’m glad I found this group. I’ve been using red light therapy on my feet and lower legs, and it has helped with my feet from feeling like they’re freezing all of the time. I stopped using it for a few days and my feet felt like ice cubes again. After two days of using it again they feel warm. I hope that will help the other sensations and strength too.
I haven’t heard much about autonomic nervous system with polyneuropathy. I have periods of dizziness, I can take a short walk with the dogs and come back, feeling dizzy and exhausted. Even though my strength overall is still good. I have started having hot flashes which I’ve been gone for 20 years. I would like to know more about the autonomic nervous system system affect and if there’s anything I can do about it. Also, I was wondering if Covid could be a cause.

Jump to this post

Welcome @abbyrose, We are glad you found Connect also! Learning as much as you can about your condition and what treatments are available that provide relief is the best that any of us can do to help ourselves. The Foundation for Peripheral Neuropathy has quite a few articles on polyneuropathy if you want to scan through them - https://www.foundationforpn.org/. They also have a YouTube channel where the keep all of their previous webinars which are a gold mine of information and sometimes easier to digest than reading research - https://www.youtube.com/@foundationforperipheralneu4122.

My non medical opinion is that Covid could possibly be a cause or at a minimum have an impact on folks with neuropathy. Here's an FPN webinar on the topic - https://www.youtube.com/watch

REPLY
Please sign in or register to post a reply.