Living with Neuropathy - Welcome to the group

Look for them thank you for that information. I was off of here for a month and a half because my computer went out and now I've got a smartphone so I am back.

I was diagnosed with PN about six years ago--slight tingling of the feet. Cause was alcohol consumption which I believe was an easy diagnosis. Have had several EMP's and MRI's over the years showing a continuing deterioration of the nerves in my legs. No pain but loss of balance and strength. PT has helped a bit but have seen a greater loss in feeling this last year. Have been looking into HBOT therapy, PRP and stem cell therapy but neither are covered by medicare and clinics I have talked to offer treatments but at a huge cost. Has anyone had any success with these or other therapies and if so where? The lack of mobility has curtailed my ability to do much these days. I am 77 yrs. Any info would be appreciated.

Hello @johnnyb, welcome to Connect. I was diagnosed with idiopathic small fiber PN 2 years ago but I've actually had it for well over 20 years. I just didn't pursue it because they told me up front that if it is nerve damage they can't do anything to fix it. I only have the numbness with my PN. I don't know much about HBOT therapy for PN but there is other information about the therapy on Mayo Clinic's website here:

-- https://www.mayoclinic.org/tests-procedures/hyperbaric-oxygen-therapy/about/pac-20394380

I have no medical training or background and as much hope as I think stem cell therapy holds for neuropathy I have found no evidence of successfully treating PN with stem cell therapy. There are also no clinical trials for stem cell therapy for treating neuropathy as far as I know. We had a guest speaker on stem cell treatment at the Minnesota Neuropathy Association this past August who discussed it in details. I attached my notes from the meeting along with some links to references the speaker made.

There are a lot of people making money off of those of us with neuropathy looking for the magic cure. Here are some of the sites I use when trying to verify whether something is not a scam.

Quazar's guidance about avoiding scams and snake oil cures
-- https://connect.mayoclinic.org/discussion/how-to-avoid-quacks-and-snake-oil-treatments/

FDA's Health Fraud Page
-- https://www.fda.gov/ForConsumers/ProtectYourself/HealthFraud/ucm539101.htm

NIH's National Center for Complementary and Integrative Health (NCCIH) which offers guidance about integrative health and how to evaluate it.
-- https://nccih.nih.gov/health/decisions

I take supplements which helps me but it is by no means a cure. You can read my story in an earlier post here:
-- https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

Here are some member posts on Low Level Laser Therapy:

@swiss
-- https://connect.mayoclinic.org/discussion/in-search-of-relief/?pg=1#comment-130717

@holhealthcare
Can Low-Level Laser Therapy Have An Impact For Small Fiber Neuropathy?
-- https://www.podiatrytoday.com/can-low-level-laser-therapy-treat-diabetic-peripheral-neuropathy

@johnnyb are you able to do any exercise that helps with your mobility?

John

Thank you fo the reply and information source.
I have asked once before and did not have any responses about PRP or Prolotherapy. Are there any information sources regarding this procedure and more important doe it work?
Thanks again and most appreciative about the information you provided.
Fred

Hi Fred @goetf4997, I have no experience or knowledge of Prolotherapy but did find a few links that may provide a little more information.

Platelet-rich plasma and the elimination of neuropathic pain.
-- https://www.ncbi.nlm.nih.gov/pubmed/23832571

Sugar Coated Nerves: The Pseudo-Science of Neural Prolotherapy
-- http://nationalpainreport.com/sugar-coated-nerves-pseudo-science-neural-prolotherapy-8822875.html

Mayo Clinic -- Is prolotherapy an effective treatment for chronic low back pain?
-- https://www.mayoclinic.org/prolotherapy/expert-answers/faq-20058347

There has been some success with Platelet Rich Plama (PRP) but I'm not sure about neuropathic pain. Mayo Clinic Regenerative Medicine has some information here:
-- https://www.mayo.edu/research/centers-programs/center-regenerative-medicine

Hope this helps...
John

Thank you for these resources ... they might save some of us from wasting time and money. Sometimes I just can't believe what the FDA lets manufacturers get away with (like 'super-foods', 'cures' and 'anti-aging' products that are nothing more than some cheap B vitamins and herbs grinded up and stuffed into capsules). Peggy

My name is Nikki, I'm 46 years old and I was recently diagnosed with idiopathic peripheral neuropathy with symptoms of numbness and burning pain in both feet. In February of 2018, it started with a little numbness at the base of a couple toes and has since spread to constant numbness in both feet. My primary care physician was as thorough as he could be (blood tests, EMG, etc.) and because I have multiple autoimmune diseases (vitiligo, IBS, eczema & hypothyroidism), he ruled out MS, Lupus along with Lyme disease, diabetes and probably other diseases which I just can't remember He prescribed Neurontin, starting at 300mg 3 times a day with the goal of 900mg 3 times a day but the side effects (fuzzy brain & blurry vision being the worst) were too much so I topped out at 600mg three times a day. I was also prescribed Elavil (75mg) to take at bedtime to help me sleep better. There was no relief, no change in my symptoms with that medicine, so he then referred me to the Cleveland Clinic where I met with a neurologist in October of 2018. He ordered many blood tests, an EMG, a skin biopsy, a vascular ultrasound and I had an appointment with an endocrinologist to make sure my hypothyroidism was not the cause. He also started me on Lyrica with the end goal being cutting out the Neurontin entirely due to the debilitating side effects and having Lyrica take over. All tests came back normal so now they want to refer me to a "functional medicine doctor". This whole situation has been physically and mentally draining. I have been a stay at home mom for almost 11 years but had recently gotten back into the workforce with a legitimate work from home position which made me so happy. However, I lost that job because I can't retain new information and I can't seem to think straight anymore. It's almost like my brain is misfiring where I know I should know how to do something but my brain is just not getting there. I will be honest.....I have become extremely depressed (not suicidal) since learning all the tests from the Cleveland Clinic came back normal. My symptoms have continued to worsen with no clear diagnosis. This Tuesday, I am going to see a psychologist who helped me deal with my grief when both my parents passed away from cancer back in 2005 and 2007. I'm sure this is all way too much information but I wanted to paint as clear a picture as possible. I really need to chat with and learn from others who are suffering from the same issues as I am.

Hello Nikki @nicoletta8, welcome to Connect. I also have idiopathic small fiber peripheral neuropathy but I only have the numbness and tingling. I don't have any real pain with mine. I take some over the counter supplements - vitamins and minerals that help with my symptoms but may or may not work for you. You can read my story in an earlier post on Connect here:
-- https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

There is another active discussion that may be helpful for you to read through and meet others who may have some of the same symptoms.

Groups > Just Want to Talk > Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) treatments
— https://connect.mayoclinic.org/discussion/myalgic-encephalomyelitis-chronic-fatigue-syndrome-me-cfs-treatments/

Nikki it sounds like you certainly have a lot going on and I'm sure it's not easy dealing with everything while being a mom and trying to work from home. Are you able to share a little more about the symptoms you are trying to get diagnosed? Is it the cause for the numbness and burning pain in the feet?

John

Nikki you have done very good in getting all the testing done and going to a specialist. I among many others are idiopathic with neuropathy. It is a lot to take in so it is not surprising that you have depression. I see you are going to see a psychologist. You are doing all the right things so feel good about how you are handling all this.

Hi

I am wondering if you are aware of any nueropathy support groups in Dublin or anywhere in ireland.

I have nerve damage as a result of broken disk, nerve compression, followed by epidurals and finally surgery. I have drop foot, weak left hip & leg, burning in leg which intensifies at night. I suffer back ache as a result of back muscles over working. Chronic fatique is a big problem. Prior to this I was very sporty, cycled, walked, mountain climbed so very frustrated. I can do static gym work and have recently started swimming which is a great help and certainly helps me mentally. I wear a foot brace, use a nerve stimulator and walking stick as required. 16 months on, I have come a long way but can't seem to be able to build strength/stamina to return to work. My consultant had said if nerve has not recovered in 18 months (16 months since surgery,) it will not recover.

Regards
Clare