Spreading Sensory Peripheral Neuropathy - What next?

I have had a second opinion workup with Dr. Amanda Guidon, a neurologist at Massachusetts General, with offices at 165 Cambridge St., in Boston. She has worked with my primary neurologist, Dr. Kara Anne Stavros in Rhode Island at Brown Neurology in Providence. I had mentioned Dr. Oaklander to Dr. Stavros, but she thought Dr. Guidon would be a better fit, based on the tests I had already had. Both doctors have settled on an autoimmune reaction to either surgery. Anesthesia, infection or medication. Good news is that autoimmune opens up immunoglobulin infusions as a treatment. I have completed four out of six cycles and feel more strength in my legs. I also am going to Aquatherapy once a week, with a goal of eventually swimming again.
I hope this information is helpful for you.

@zwieper, the B vitamins may be able to address your spreading neuropathy. Quick melt sublingual vitamin B12 in the form of methylcobalamin by passes the digestive system and brings it's benefits directly to the blood
stream. Thiamine (vitamin B1) is a another to bring to bear. Thiamine is subject to anti thiamine factors that diminish or destroy thiamine. The stuttersence link contains a comprehensive list. Thiamine also needs magnesium to activate it as well as vitamin D. Activated thiamine in turn activates vitamin B6 a vitamin which a deficiency causes peripheral neuropathy. Supplementing above the daily requirement for B6 in your age group should only be done with your doctor's supervision. A form of thiamine called benfotiamine offers high absorption. In general the B vitamins work better together. Utilizing a B complex and supplementing with methylcobalamin and thiamine offers a comprehensive approach to a spreading neuropathy. Always consult your health care professional before using any supplement.
https://www.researchgate.net/publication/339412930_Potential_Benefits_of_Methylcobalamin_A_Review
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4208100/
http://stuttersense.blogspot.com/2014/08/these-factors-reduce-your-thiamine.html

@zwieper @efgh1020 @gracen22 @kmst1994 @collierga @dbeshears1 @julbpat and anyone else I missed in this thread. Here's comes a long one...

I am SO moved by this group and the positivity bouncing around like a ping pong ball! You have made my day and motivated me. And yes, for those who don't know me, even I still need motivation some days. Thank you!

Welcome @zwieper and thanks for joining the conversation. I was denied by Mayo too. I took it hard back then when I was in a different state of mind but ultimately realized there wasn't much they could do for me. Neuropathy is a slow grind and slaps you across the face when your not prepared for it like any other chronic condition. "Chronic"...that word just sucks, doesn't it?

My stories are scattered through Connect and there's a lot of them. I came here originally to learn about Small Fiber Neuropathy. Docs blamed SFN on B12 deficiency to which I supplemented, but there was much more going on. These "popcorn" symptoms I was having were increasing on top of the traditional neuropathy burning skin, electrical sharp pains, vibrations, spasms, etc... Here are a few different conversations about my journey and the ups and downs along the way, if interested:

- https://connect.mayoclinic.org/comment/310343/

- https://connect.mayoclinic.org/discussion/central-sensitization-please-share-your-stories/

- https://connect.mayoclinic.org/discussion/eyes-and-neuropathy/

- https://connect.mayoclinic.org/discussion/mayo-pain-rehabilitation-program/

- https://connect.mayoclinic.org/discussion/smart-goals-and-chronic-pain-how-smart-are-you/

Here's the thing, it does not take rocket science to figure out that pain leads to depression and anxiety because we want to feel better and we are scared and we freak out and more symptoms keep popping up and it spirals out of control. At the end of the day acceptance is a "you know what" and takes real work to come by. No one wants to surrender without a fix or a cure, but there is so much hope to quell symptoms and allow ourselves to bring that forest fire down to a house fire or even better slow burning embers.

Where do we go from here? Well, today I just read awesome inspiration about small wins like pushing a grocery cart in the store!! YES! I live on small wins too, I live on gratitude, and focusing on what I can do versus what I can't do. I live on moderation, modification and mindfulness. Proper breathing techniques and relaxation to help fight through the difficult symptom flares. I live on distraction, humor, music...anything that can allow my brain (where all that pain is stored) a temporary vacation. I live on better nutrition and better sleep hygiene. I live on more stable and better controlled emotions and behaviors. I have been through a whole bunch of "stuff" like many of you, and my journey has been a grind.

Turning my anger and disappointment of life changes into a mission, I found that when Mayo denied me to be evaluated for care it motivated me to think outside of the traditional medical treatment box, which was not working anyway. Knowing that I had neuropathy and eventually coming to my own self-diagnosis of having Central Sensitization Syndrome (CSS), I applied for the next best thing at Mayo which was their Pain Rehabilitation Center and found the incredible Dr. Sletten who ran a 3-week outpatient program. Here's info on the PRC program:

- https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/sections/overview/ovc-20481691

CSS for those that have never heard of it is a Central Nervous System and Peripheral Sensory Input disorder and umbrella to many diagnoses like neuropathy, IBS, migraine, sleep disorders, depression, etc... Here's a video from Dr. Sletten:

Folks, if it weren't for @dbeshears1 posting a beautiful gratitude note to me (which I will respond to in its original thread), I may not have seen this neuropathy thread. Forgive me for being long winded and throwing so much at you, I get fired up and passionate about this stuff because I know where I've been and I know where I'm at now. People are struggling out there to simply find a better quality of life and trying to not let neuropathies, gut issues, fibro, depression, anxiety, etc... dictate and take away their right to be in control and know there is hope that life goes on after diagnoses, if we choose to work at it. We really can take more responsibility for our own health and not be so dependent on doctors and drugs that are not needed for our survival. I completely understand that not everyone can attend a rehabilitation center like Mayo PRC, but there are tips that we can pick up from each other like you all have been doing in this thread.

As an exclusive bonus, Connect is proud to be able to share a Mayo PRC Family Day video which I hope you will take tips from. This video gives a deeper dive into what one week at the program looks like. At the end of each week, a session is held for family members to learn what we patients learned and how they can support and help us implement these lessons. It takes a village! Here's a peek into a week:

Whew, I just did what we call in PRC, "Push/Crash", not good, but you're all worth it.

Congratulations to everyone who is doing their best today and appreciating their small wins. One day at a time. I am very hopeful that many of you already have this chronic pain/symptom thing down, but for those who are struggling, know that Connect is here for you and I am happy to further share anything you may have a question about. What is your next move? Do you have a plan or a goal?

Good morning. I, to can not get into Mayo, they will not take medicare. Going back, my neuropathy Dr. (not Diabetes )has been increasing ( they thought I had Raynaud's disease yr 2014) in numbness (from toes now up to ankles) lacking of coordination & falling, muscle weakness, motor nerves are affected, tinkling in fingers & feet, burning feet & a few more things that I can't think of right now. So, my biggest problem as of two years ago, was the pins & needles felt in my hands, fingers & feet. My neurogist suggeted a supplemet called Alpha Lipoic Acid, 200 mg-400mg daily. After 2 weeks, my hands & feet had releif. It started to come back after 3 months, as my body adjusted to the supplement & I increase to 400mg in AM & 400mg in PM, I doing great & that was 2 years ago. It gave me a lot of HOPE. Now, I have problem is my feet. The numbness is going up the side of right leg & both feet are starting to burn, so I found Aloe with lidocaine & rub on when they start to burn. Instead releif. Nice & cool, no burning & goes away till the next time. Well, I decided to go back to my Dr & he thought I'd be a good person for the SANEXAS Treatment. (approved by FDA) Sanexas is a completely non-invasive treatment that helps relieve the pains & symptoms of neuropathy. It is a safe, effective & non-pharmaceutical treatment option that improves circulation & neuromuscular rehabilitation, along with providing pain relief. Anyway, longer story-shorten. I set up appointment, was tested again (TM-flow) it's the cardiometabolic score (on legs) & have received two treatments (of the 8) so far & I'll tell you, so far, I haven't had burning in feet. Which is so much of a releif for me. The Sanexas treatments are trying to penetrate deeply into the affected muscles & damaged nerves to treat pain (with electrical signals) at the source without breaking the skin. I am going to continue with the treatments as I am willing to try anything natural to lengthen my walking/movements for more years to come. Oh yes, I now have gotten back into my Yoga for exercise for slow steady movements to help muscles & stablity. I wish you well.

Acupuncture helped me most but you need to find the right one. Community acupuncture is more cost effective. Prayers for your healing.

I just had my 4th acupuncture therapy. This was the number of treatments they said I should have before deciding if it worked for me. I have had a good experience. The different feelings and sensations I experienced are hard to articulate, but the major thing is that I felt that my neuropathy became less “angry “. My arms and legs have felt some relaxation, less numbing and tingling, and reduced nighttime restlessness & heaviness. I’ve decided to give it 2 more sessions before ending. It’s not intended to be a life-long treatment, if I want, I can schedule maintenance as desired in the future. Anyway, we’re all different but it has been a positive experience for me at this point.

You said you had less numbing and tingling, which is great. For my tingling that felt like pins & needles, I take a supplement called Alpha Lipoci Acid 400mg twice a day. I felt relief within 2 wks as supplements work slower. I am so happy I'm taking it & won't be without it. Its 2 years now. I do not have that feeling anymore. You can increase the mgs if you need to. I'm up to 600mg AM & PM.
Good luck

Thank you - so many folks on here have talked about Alpha Lipoic Acid that there must be something to it! May I ask where you get yours from and approximate cost?

You can buy off of Amazon. The brand I use is called "NOW" I have my order on Auto Deliv every 3 months, 120 veg capules. Amazon is the best deal for price & delivery.

Did you experience heart burn with alpha-lipoic acid? It gave me terrible heart burn.