Polyneuropathy

Thanks, @lewin, for kicking off this discussion. The longer I hang around Connect and the more posts I read, it grows more obvious that one thing we folks with our varying forms of PN have (and we've far more than just one thing in common) is the seemingly never-ending search for good health providers. Some months ago, a friend introduced me to a service I'd not heard of before: a Patient Navigator. My friend explained that the Navigator's role (and my friend is one part-time) is to help patients make their way through the labyrinthian maze of medical paperwork, making good choices among a gazillion specialists, interpreting lab results, etc. Of course, the Navigator my friend was talking about had nothing specifically to do with neurology. Reading all of our Connect posts, it struck me how much of help it could be to those of us with neurological disorders if there were such a service as a Neurology Patient Navigator. –– Ray (@ray666)

I feel your frustration! Neuropathy has kind of taken over my body. I have so many symptoms all the time, including extreme torso tightness/spasm 24/7 for 3 years!! The doctors just tell me they’ve never heard of that. They don’t even attempt to help me figure it out. It seems like I basically just need a new spine, haha!! I have been diagnosed with Raynard Sequard Syndrome, I’ve had neck surgery and now apparently one of the cages has slipped and I need lower back surgery. I had massive amounts of chemo and prednisone when I had Burkitt’s Lymphoma 9 years ago, and then I had a neck injury about 4 years ago. The consensus is that all of this is caused from all of that. The numbness, burning pain, intense itching, twitches, spasms, weakness, fatigue…It’s just all too much. I’m so discouraged and I’m so sorry and sympathetic to what you’re going through. I agree, supplements seem worthless! I wish we had some answers. I just do my best to cherish the moments when I don’t feel awful. I’m a 64 year old female btw and this is my first post. Sorry it was so long! Does anyone else have the torso tightness, kind of like you’re wearing a corset made of wood? It’s so awful! Thank you for listening. ❤️

Welcome @kath1492, I can't imagine how difficult it is to manage so many different conditions and not get any good answers for treatments. I struggle with my neuropathy numbness, balance and a few others but nothing compared to what you are dealing with.

@sf2021, mentioned similar torso tightness and started a discussion here that might be helpful:
--- Idiopathic Small Fiber Neuropathy - chest pressure/tightness: https://connect.mayoclinic.org/discussion/idiopathic-small-fiber-neuropathy-chest-pressuretighteness/.

Have you done any research on alternative or complementary treatments that might help?

I feel your frustration! Neuropathy has kind of taken over my body. I have so many symptoms all the time, including extreme torso tightness/spasm 24/7 for 3 years!! The doctors just tell me they’ve never heard of that. They don’t even attempt to help me figure it out. It seems like I basically just need a new spine, haha!! I have been diagnosed with Raynard Sequard Syndrome, I’ve had neck surgery and now apparently one of the cages has slipped and I need lower back surgery. I had massive amounts of chemo and prednisone when I had Burkitt’s Lymphoma 9 years ago, and then I had a neck injury about 4 years ago. The consensus is that all of this is caused from all of that. The numbness, burning pain, intense itching, twitches, spasms, weakness, fatigue…It’s just all too much. I’m so discouraged and I’m so sorry and sympathetic to what you’re going through. I agree, supplements seem worthless! I wish we had some answers. I just do my best to cherish the moments when I don’t feel awful. I’m a 64 year old female btw and this is my first post. Sorry it was so long! Does anyone else have the torso tightness, kind of like you’re wearing a corset made of wood? It’s so awful! Thank you for listening. ❤️

My heart goes out to you. Here I was feeling sorry for myself and I have only a fraction of your ailments. You are very brave and I just hope there is a cure around the corner for all of us ..Take care of yourself as best as you can.

September 2023: The latest impression from MRI of Neck & Nerve Studies shows generalized acquired sensory polyneuropathy, demyelinating. C5-6 to a lesser extent C607 radiculopathy on the right. Clinical correlation is avised.

I was diagnosed in 2019 after taking the Shingrix Vaccine with the 2nd dose bringing on the onset of all of this. Here it is 2023 and I am worse. No one is sending me to anyone to get help. What do I do? All that was said to me was I need to see a Spine Surgeon, possibly injections, therapy or surgery, but no one referred to anyone. I can't stand the pain any longer. Any input would be appreciatated.

September 2023: The latest impression from MRI of Neck & Nerve Studies shows generalized acquired sensory polyneuropathy, demyelinating. C5-6 to a lesser extent C607 radiculopathy on the right. Clinical correlation is avised.

I was diagnosed in 2019 after taking the Shingrix Vaccine with the 2nd dose bringing on the onset of all of this. Here it is 2023 and I am worse. No one is sending me to anyone to get help. What do I do? All that was said to me was I need to see a Spine Surgeon, possibly injections, therapy or surgery, but no one referred to anyone. I can't stand the pain any longer. Any input would be appreciatated.