Living with Neuropathy - Welcome to the group

Hi, Susan (@scain),
I appreciate your trust in the length of time I've had PN, but that really has nothing to do with what will or won't work for you. Bummer, I know. Yes, the Tramadol is for pain, along with Pregabalin ~ but I'm not sure I can compartmentalize which does exactly what.
Actually, I was not medically diagnosed until an EMG in 2021. And I wouldn't have known to have that test had it not been ordered by the orthopedic surgeon who operated on my back a month later. Knowing what I do now, I am sure that the surgery was responsible for worsening the neuropathy that I'd had all those years but which had gone undiagnosed (and therefore untreated except for an over-the-counter eucaliptus/menthol spray for the burning), and that my surgeon was smart enough to have a record of the diagnosis before performing the procedure.
From what I have been able to discern from the comments here on Connect, the EMG would tell you, among other things, whether yours is Short Fiber or Long Fiber. It seems to make a difference as to which treatments prove more effective.
I have noticed that over the years, the symptoms that present themselves seem to cycle, or come and go. Many years ago one thing that drove me crazy was an itching so deep inside my heels that nothing could relieve it. Then for many years that seemed to go away and be replaced by terrible pain that kept me up almost all night. Now, with pain almost completely under control, the itching has reappeared occasionally, and mobility and balance are daily challenges. Go figure!
I wish you all good things as you seek information and answers! It's not always easy or straight-forward.
Barb

Thanks for the info. I do have an emg and NCS tests scheduled for next week. Also blood work to do. I think the only thing that worried me after my initial appointment with the neurologist is that she said when I was in my way out of the office to tell her asst. to make the follow up appt. for 6 mos! I felt that after these tests were completed we would have an appt. To talk about them. I mean how helpful can these tests be to her at that late date. I mean it is me who needs some relief. Is that she doesn't have any relief to give me or that the tests won't give her any new info. I find this whole diagnosis as confusing and frustrating as many if you do who write in. I did find the names of neurologists in Boston who specialize in neuropathy and wonder if enough people who write in here had better experiences with seeing them. If course as a lot of us have mobility issues including me it will involve me getting help with parking walking some distance etc. Is it worth it if no one has answers. It is sort of a mess at best. I guess u will get the tests done as asked and give her a chance to respond and if not I will probably see the specialist. Well I guess I am just thinking out loud at this point. It's late and I Am up with annoying pins and needles in my foot keeping me awake. Thanks again. Susan

Hi Susan (@scain),
As I read your reply I really, really feel your frustration, and I don't blame you. That said, I don't believe you are necessarily being put off by your doctor. There just aren't enough neurologists to meet the demand, and they spend so much of their day writing Client Notes which, from what I can gather, must be expressed in detail ranging from the sublime to the ridiculous in order to justify reimbursement by insurance.
I also wonder (but haven't thought to ask) if they might be affording you time to see if over a few months your symptoms change or worsen or even improve. This condition acts like it has too many moving parts and they all seem to be well oiled!
Unless I am genuinely mistreated, I make it a point to be sure my interactions with the office staff are always kind and gentle and patient. They do want to help us as much as we want them to. I know it's hard when you're in pain basically 24/7/365.
By the way, I had a bad night last night with my feet, too! Grrr...
Barb
Barb

When I first started physical therapy, my therapist walked behind me and talked. As I turned to acknowledge him, I realised that I had the same issue you speak of. It was more acute when turning to the left. I use a rolling walker as a single cane does not make me feel secure. Mine is not diabetes related.

Thank you Barb for the advice and sympathy. I think the bottom line for me is should I continue to see my local suburban hospital neurologist who by the way us pleasant and who has given me no indication that she won't be thorough I continue to ask people on this site if they are or were seeing a specialist found on this site. About 30 yrs. ago I had a nasty skin patch on the sole of one foot. The local dermatologist continued to call it one thing and prescribed a cream. I happened to mention it to my mother and she said that I should go into Boston to a certain hospital that was known for their dermatology department. She graduated from this hospital as a. R N during WW 2 years. So I took time off from work and saw them. A doctor came in with a gaggle interns (it was a teaching hospital) looked at my foot and without any hesitation said was it was and what the treatment was. I guess this has always stuck with me. Now granted PN is a horse if a different color but if the neurologist is seeing PN all day I am thinking he/she knows what it is and what works. This may be a simplistic example but after reading a lot of stuff on this site a lot of symptoms and a lot of treatments and very few of these are content with it. I know everyone is in their own journey but as I am new to PN I guess I am clinging to the hope that there are doctors out there who know what they are talking about. I will if course treat the prescribing doctor with respect. I come from a family of doctors and nurses. It was Sunday afternoon dining room chut chat! Lol

Hi, @lvgal

Some of the balance work I've been doing seeks to address this matter of distractions and sudden turns. the more I do of this work, the better I seem to get at not letting distractions and turns totally discombobulate my internal gyroscope. Have you tried any balance work?

Cheers!
Ray (@ray666)

Hi, my name is johnnie ray and I have had peripheral neuropathy for about three years. My VA doc and Medicare doc both tell me nothing will help. All they offer is gabapentin or Lyrica .

Hi, Barb

Fetching that morning newspaper is Ray's First Great Adventure of thr the Day.
Our front door has an unusually muscular pneumatic tube that, as you attempt to step out, tries its damnedest to push you back indoors. (We've tried adjusting the tube. No luck.) After that, there's the garden walk. Once you reach the end of the walk, the next giggle is finding where the morning paper, pitched from the passing delivery van, has landed: findable? reachable? beyond the curb? on the roof of my Jeep? unfindable? (always a possibility). All the while, my eyes are darting right and left, knowing that if I'm not vigilant I'm sure to be mowed down by a 80 mph skakeboarder.

Cheers!
Ray (@ray666)

My Physical therapist is working with me on this. Slow, but sure

Hi @johnnieray47, Welcome to Connect. Sorry to hear you are dealing with peripheral neuropathy. PN is what brought me to Connect back in 2016. I shared my neuropathy journey along with other members in another discussion here - https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/.

I know it's not much comfort but you are not alone. I think most of us suffering with the different neuropathy symptoms came to Connect hoping to find the magic bullet that cures neuropathy when one doesn't exist. What we can do together is share our experiences and learn from each other what we have found that has provided us with some type of relief. The best thing we can do is be our own best advocate by learning as much as we can about our condition and what treatments may provide a form of relief. A great place to learn more about neuropathy is the Foundation for Peripheral Neuropathy website - https://www.foundationforpn.org/living-well/.

Have you done any research on alternative or complementary treatments for neuropathy? What symptoms bother you the most if you don't mind me asking?