Neuropathy: What works and what are scams?

Hi Stef, You didn't break any rules 🙂. There is actually a discussion on the PEA supplement.
-- Palmitoylethanolamide (PEA): Anyone had success?
https://connect.mayoclinic.org/discussion/pea-success/
If you do a search there are quite a few comments from members. Here's a list that you might want to look through - https://connect.mayoclinic.org/search/?search=PEA%20supplement.

Hi Stef. I too am desperate…it is definitely affecting my quality of life. Much of the time I can manage the pain but sometimes it’s too much. I did do dry needling for about a year but that wore off. Since the beginning if it’s too much I will eat a gummie. I keep them by my bedside for when I am woken up by it. It’s the best remedy I have found. Good luck with your search. Know that we are all understanding and want to find a cure!

Hi John, Thanks for the information. I will look it up.
@wolfie1, Hang in there. Whenever it is happening, know someone - many someones - are also feeling pain.
Thanks, Guys, Stef

Try Nerve Control 911! It works for me! I’ve taken it for 3 years. I have PN diabetic. Pain was excruciating before I found this capsule. I take 2 a day. Also tried cyclobenzaprine & Pregabalin with no effect. I’ve shared this more than once on this website but have never seen it posted. ??? I’m only trying to share what works for me.

Hi @alicebrown, you can see all your comments in your profile https://connect.mayoclinic.org/member/00-2d7a2da4f28b1dde376435/activity/comments/

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Hello there,
I am new to this group but at 76 I tried to get out of bed one morning about six years ago and the bedroom ceuling literally was spinning round, I stood up lost my balance and fell back on the bed after few minutes I finally tried again and hanging onto the walls, kitchen tables etc.. I made it to the washroom and hanging on to the sink I found some relief all the while my head was spinning.
Later on that morning I decided to go get a coffee from a coffee shop and walking or actually staggering because my balance was way off I made it to the store a couple of blocks away drawing curious looks from passersbys who probably thought I was severely drunk first thing in the morning!
Later on that day I bought a cain and called my neurologist for an appointment.
She said after examining me and I quote "my mother has the same thing and if your balance or condition doesn't improve in two years you're stuck with it"?
I've had several ear and throat specialist doctors examine me and they all eliminated ear as cause of my imbalance, I am OK driving a car, watch TV, and short walks etc.. all activities that don't require extended walking otherwise I use a Cain and for longer walks I use a walker.
About a year and a half ago I finally got a new neurologist and after some tests she determined that the nerves in my feet do not connect to my brain (nerve deceise)

Welcome @seadog, You are not alone with walking issues. Many of us struggle. I struggle some myself walking any sort of distance but haven't had the dizziness you mention. Being new to Connect you might want to scan through the many discussions in the Neuropathy Support Group to see if there are other discussions that might interest you. Here's a list of the discussions in the group - https://connect.mayoclinic.org/group/neuropathy/.

Did your neurologist provide a specific diagnosis for the type of neuropathy?

To continue...
My new neurologist determined I have nerve problem (it is sick) and sent me to a RHEUMATOLOGY for an appointment.
Rheumatology specialist doctor after reading my test results said I have Neuropathy and they treat it here in this hospital with 70% success rate!
I was in 7th heaven, finally my imbalance problems may get treated!
I was prescribed infusion of IMMUNOGLOBULIN 80 mg twice a month since February 2024 with no noticible improvements in my balance so after a few months they taught me how to administer extra doses 20 mg per week at home.
Hospital send several boxes of medical supplies syringes a pump etc... and Vials of IMMUNOGLOBULIN to my home at no charge (thank you Canadian Health System).
Sadly 10 months into treatment I don't see any I mean ANY improvements in my condition my balance hasn't improved, the only thing that I noticed is the ringing in my ears has decreased in volume and sometimes it disappears completely.
I am going to continue with this infusion of IMMUNOGLOBULIN until February 2025 and the doctor will suggest other treatment if there is still no improvement.
Tomorrow November 12, 2024 I have an appointment with private medical clinic that offers physical therapy and other treatments for Neuropathy I will keep you posted if I will sign up I need to try some additional remedies this loss of balance has ruined my life and I am not willing to give up just yet, thank you for letting me venting sharing is also a form of therapy.
Seadog

CORRECTION:
The doses prescribed are 80G IMMUNOGLOBULIN twice/month at hospital =160G/mth plus 20G/week of self infusion at home =80G/mth for a total of 240G/month!

Hi iam 79 had have had it since 2019 like most folk iv tried so many things total cost prob 3000 sterling tabs nueroligists gadgets no luck but about 3 years ago I bought a pair of compresion boots for about 175 us dollars similar ones can be bought now for around half that price did nothing for me then I read that using them twice a day for 30 mons might help blood flow if bad circulation is your problem I now get 6 to 7 hours sleep say 6 nights a week which is fantastic for me I mean if we can get more sleep the day after is easier to cope with these boots do not eliminate pn but they seem 2 work for me I read once that we should all try try and try again as we might find something to at least help the quality of life you can spend 1000 dollars on the top of range no need currently on e bay and other sites 80 or so they mive the blood back up to your heart it's very important that I use them b 4 bedtime and after all we all sit in the evenings anyhow so no big effort there I just hope this info helps we go on holiday nx month and my boots although a bit bulky but lite will go with me hope this helps james n ireland