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Polyneuropathy
I am fed up with lack of research and current doctor who doesn't try and get my help. I have getting sicker and sicker. I have so many horrible symptoms. This is a neurological disease. I am losing control of my bladder. Was up three times last night. I live in Pittsburgh and there are no doctors here who can help me or understand the illness. I am tired of hearing from people who use supplements to help with what is a degenerative neurological disease.
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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.
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2 ReactionsHi, 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??
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1 ReactionI was diagnosed with diffuse polyneuropathy. The physician told me there are no treatments and no cure. It’s a life- altering situation, for sure. I can’t stand without a cane or holding on to something. My balance issues have been progressive.
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1 ReactionI did PT….didn’t make a difference after one year
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2 ReactionsHi, 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)
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2 ReactionsI had several rounds of Privigen infusions for my CIDP and they did not help me at all.
My neurologist told me to stop them since they didn’t help me.
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2 ReactionsI had been diagnosed with SFN and polyneuropathy in 2018 which had been getting a bit worse over time. A single Shingrix vaccine early this year triggered some weird cardio, blood pressure and additional neurological/visual problems, but not much help at the time from the ER, my primary care or neuro docs. I recently recalled the black box warning about Guillain-Barre' syndrome and mentioned this to my primary care doctor 7 months after the shot. They mentioned that perhaps I should have seen an immunologist. Why this wasn't recommended after my emergency room visit, I don't know. Though things now seem to have settled down blood pressure wise, but I am now hesitant to get ANY vaccine, not wanting to go down this road again - especially without timely medical assistance.
Thanks for the helpful information. How long have you been dealing with PN? I started about 3 years with back pain and after 2 surgeries, PT and seeing a neurologist, I recently was diaganosed with PN due to the chemo I had because of breast cancer. I hope I can find the exercises and routine that works for me. Best wishes to you!
Hi, tepid (@terid)
I was diagnosed in August 2021, but once I'd been told what I had was PN, I was able to think back going on 10 years and reconsider all the times my balance hadn't been quite right. The episodes were brief and not very alarming back, so I never made much of it. Now I'm persuaded tp say those episodes were the early signs of my PN.
Good luck to you, too!
Ray (@ray666)
I was very impressed with Muhammad Taher Al-Lozi, MD at Washington University in St. Louis. It took me about 6 months to see him and beforehand I had to submit all of my numerous test results. I was very impressed with Dr. Al-Lori and his team.