Anyone here dealing with peripheral neuropathy?

Hello @bburleson1, here is a discussion about POEMS that may interest you: http://mayocl.in/2ugGGpY. Connect is a great place to share, ask questions and learn from others with similar health issues. I'm weaning off of prednisone myself for my polymyalgia rheumatica (PMR), not as fast as I would like but every day is a new day. I too try to take each day as a blessing, one step at a time.

Another site you might find interesting and uplifting is http://stressfree.org/ - Resilient Living with Dr. Amit Sood. Here's a sample of one of the uplifting videos on his website:
http://bit.ly/2t2low2
John

I promised to report my progress. It's been 4 weeks since the spinal cord stimulator was implanted. The benefit of the Burst DR stimulator isn't really felt until the surgical inflammation and scar tissue have started healing. This past Saturday was the first time I could say definitively that I felt real relief from the peripheral neuropathy pain in my feet. I'm not all the way there yet, but I think I can see the light at the end of the tunnel. The company rep did some fine tuning today, and I can call him anytime I think the controller needs some adjustment. At this point, I can work all day in the yard and gardens and pasture, and my feet won't hurt much. 4 weeks ago, my pain might have been a 7 or 8, but now I can say that it's only been to a 3 or 4. Pretty exciting!

Jim

Hi Jim, that is really good news and I would be excited too! Hoping it keeps getting better and better.

John

Hi Jim, a Burst DR stimulator as a spinal cord implant, is that a difficult operation or a routine implant? What is the cost in the US? I wonder if I can find such a methode here in Switzerland where I have tried just about everything and would like to evaluate this method through my neurologists.
Thanks for your help and continued success, felix

Hi Felix, I found a lot of links that show research and development being done in Switzerland but I couldn't find any treatment centers. Here is another patient story from Mayo Clinic about the spinal cord stimulator - http://mayocl.in/2udu6Xx.

Do you think if you shared it with your neurologists they might have contacts to see if it's being done in Switzerland? Here are a couple of links discussing the research done in Switzerland:
http://www.neuromodulation.com/switzerland
http://bit.ly/2vceXCZ
Here's a link that discuss the cost and estimates around $17,000 - http://bit.ly/2tMvXQX. It would be interesting to see how much it has cost for those who have had the spinal cord stimulator implant.

Hoping you find some help.

John

Hi bburleson1, it sounds like you are telling my story. I've been dealing with this for 3 years now. First it was MGUS with PN. I was started on plasma exchange for 6 months with a break to remove my tunnel dialysis catheter. After 3 months I was already headed down hill. I was given heavy does of steroids to see if that helped. Nice try but nothing. I tried 3 rounds of Ritoxin that didn't help so I was back on PE while they tried to figure out what my diagnosis was. One Dr said it was CIDP and one Dr said it was POEMS. More test, bone marrow biopsy, fat aspirate, blood test, EMG, EEG, seral nerve biopsy all that were going to determine what I had. And all the test came back that I had indicators for CIDP and POEMS. I started on cytonixin and after 2 rounds of that I went walking to being unable to use my legs or arms. I called my Mayo doctor who sent me to Mayo-Methodist hospital where I was started with 3 days of PE followed by 5 days of IVIG. After 8 days in the hospital and being labeled a quadriplegic I start to get some feeling in my hands so I was sent to Mayo- St Mary hospital for rehabilitation. After 10 days of physical and occupation therapy I walked out of there using a walker and AFO's. It's been a year since then and now I'm doing 45grams of IVIG every 10 days and I'm back to 90% normal. I don't have any side effects from the IVIG so I'll continue until????
Bruce

Hi John, many thanks for these interesting links, this will bring me into an option in case all my other options fail, I suppose that my privat insurance may even pay for this in case my neurologists think that the neurosurgeon should be approached for this solution. regards felix

Thanks Felix. Please keep us updated if you are able to find something that works for you.

John

For anyone living in the Minneapolis area, the Minnesota Neuropathy Association is having a meeting this month. I attached a meeting flyer. Great place to meet with and discuss peripheral neuropathy issues. This looks to be a great meeting for folks with diabetic PN or with severe balance problems (I think!).

Next Meeting: 1:00 pm – Thursday, July 27th
“Walkasins Helped Me Walk Again” - Report from a patient with diabetic peripheral neuropathy

We welcome for a return visit, Dr Lars Oddsson, who first spoke to us in January 2016. Learn more from Dr Oddsson, PhD, who will share the story about Walkasins, the first wearable sensory prosthesis to help balance and mobility in individuals with peripheral neuropathy. Sole inserts measure foot pressure and gentle tactile vibrations provide balance cues around the lower leg. The technology is currently going through the regulatory process for medical devices under the FDA. This is your opportunity to see it before the device is on the market.

I attached the meeting flyer and the article that was in the Sunday, May 28th Minneapolis Star–Tribune.

John

Am really interested in the Walkasins - suppose it will take longer for us to have them in Canada. But hopefully someone will post more about them & I'll keep watching for them here.
Sheila