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've heard of Patient Navigator before, but unfortunately forgot about its existence and purpose. I totally agree with you that such an Neurology PN would be incredibly helpful and a veritable blessing! I've been doing all the work, for myself and my husband, for years. Exhausting. Frustrating. HBP raising experiences! And in my case especially, I am so tired of hearing the dreaded words "Sorry, but there is nothing more I can do for you, and no one else to refer you to other than Pain Management." Translation: "Accept your conditions and what pain specialists decides is best for you, learn to deal and live with it, and best not to ask me for any more medical help."

I'm going to contact my insurance company today, to investigate the aspect of Patient Navigator. Thankfully, we both have excellent insurance so perhaps that does exist, even if by some other title.
The thought does arise that a PN may well exist as a private entity, available on a fee schedule.
With all our medical issues, including both of us dealing with complex neuropathies and me with chronic pain syndrome, I can imagine that we would fill their time substantially...

I'll let you know what I find out.

Hi, I'm new to polyneuropathy. My neurologist recommended PT. I don't know how that will go but I'll give it a try. I enjoy walking, biking and hiking. I want to be able to continue doing these activities. I still have at least, hopefully 6 years of work as a PE assistant teacher. Is anyone else going through this??

I am not sure where you are located but it took 12 years to diagnose my CIDP. The important parts about this are the "demyelinating" and "polyneurophy", aspects which match my issues. So, just as an FYI because I have no background, but I have been receiving infusions every three weeks using Privigin, (immunoglobulin). I have had a couple of reactions but I am feeling much better. Perhaps you could at least ask your docs about this. ?

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.

Hi, kendallchase

I also did PT for a number of years. I've enough handouts here to prove it. After all those years, however, I've culled the many exercises down to my "daily dozen," those that seem to do me some good. They divide themselves neatly into two categories, six each: balance and leg-strengthening. The whole routine takes me 30-40 minutes to do. Some days I do the routine twice. As I say, these are the exercises that appear to be helping me. My chief PN complaint is poor balance, which, of course, makes walking – even short distances – both a struggle and not very pleasant (that's why the leg-strengthening).

I wish you luck in finding a routine or therapy that works for you!

Cheers!
Ray (@ray666)

I have sweating and now bad dizziness. I need to see a very good specialist. I want this sorted out if it's being caused by long-term pre-diabetes or something else. Doctors in Pittsburgh no good. I wanted to see Peter Novak at Brighan Womens but a long wait. I can go to Cleveland Clinc but don't know a very good doctor there. Who are the best doctors to see. I am tired of not knowing what is going on.