Neuropathy treatments: How to avoid scams?

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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

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!

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

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

Where did you get these boots?

Well I bought mine from a usa co I use to but tabs to help pn I however if you Google compression boots they are on sale from around 80 to 90 sterling like everything else one can pay 10 times that but these I believe are for fit athletes mine just cover the feet and legs up 2 my knees I put them on twice a day 30 mins to 40 max per time especially helpful to me at night there are a few health warnings re people who should not use these you need to check this for yourself or your doc I hope this helps my pn is still there but not so much at night and I think it's slightly easier during g the day I also walk one hour a day and swim 30 mins good luck james

I am new to this forum although I have been suffering with peripheral neuropathy for 2 years (none diabetic). Like most sufferers I have searched endlessly to find supplements that provide some relief and a possible cure. My search has proved how impossible this quest is and so expensive due to misleading adverts and down right scams.What would be really helpful if members posted their experiences with supplements they’ve tried , which were useless/helpful or obvious scams. I am sure there must be some helpful supplements out there and we would all benefit if these were posted on this forum.

Has anyone heard of Nerve Forte to help with the pain and numbness of neuropathy? How about MMP13 enzyme that is suppose to be the root cause of neuropathy? Can't get a good nights rest due to itching and stabbing pains in feet. I have a pair of reflexology shoes that I wear in the evenings and they seem to help some. I am open to suggestions for help. Thank you, Laura Henderson

I am new to this forum although I have been suffering with peripheral neuropathy for 2 years (none diabetic). Like most sufferers I have searched endlessly to find supplements that provide some relief and a possible cure. My search has proved how impossible this quest is and so expensive due to misleading adverts and down right scams.What would be really helpful if members posted their experiences with supplements they’ve tried , which were useless/helpful or obvious scams. I am sure there must be some helpful supplements out there and we would all benefit if these were posted on this forum.

@bigjohnscho
How many members on connect have you seen post a cure or even significant improvements?
But even if they did it doesn't guarantee you will receive the same results. Personally, I never bought into all the supplement, devices or clinic hype.
I also have epilepsy, neither neuropathy or epilepsy have a cure. I’ve acceped my diagnosis and there limitations and adjusted my lifestyle accordingly. I've had neuropathy for almost 40 years. As the condition progressed my pain eventually stopped, replaced by numbness and other complications. Looking back, the pain wasn't so bad after all.
Sadly many people choose to chase rainbows and end up disappointed and perpetuating the booming fraud market, making crooks richer.
Epilepsy medication has proven to be the most helpful. I have taken these horrible meds for nearly 60 years and none have helped my neuropathy and for 45 years didn't help my seizures either. However, my brother takes 3600 mg of gabapentin and it helps him some.
ALA as I understand it is more likely to help people with diabetic neuropathy. Supposedly it has something to do with insulin but ALA studies for other sufferers has shown little to no effect. Although, ALA given intravenously has a higher success rate.
If you choose to to shop on Amazon for a cure, think about this.
Research showed that in March 2019, there were 1.8 million new unverified reviews, with an average of 99.6% of them being 5-star reviews. Most of these reviews are from people paid to write them.
I hope you don't go broke searching for the elusive cure researchers all over the world have yet to find.
If start supplements, Id ask my doctor and pharmacist about them first.
You might want to check out The Peripheral Neuropathy site for potential treatment possibilities.
https://www.foundationforpn.org/
IF IT SOUNDS TOO GOOD TO BE TRUE, IT PROBABLY IS.

Jake