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:
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!
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!
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 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:
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.
Hi all. I don't know what I have from day to day. First diagnosed with GBS, sought out another neurologist and second diagnosis was CIDP. After test and seeking a third opinion, was diagnosed with POEMS. Has anyone been familiar with POEMS. I had a tumor removed in January 2017 then followed up with radiation treatments. I've been on Prednisone which helped, I didn't have all the side effects of Prednisone, weight gain. puffy face, now I'm weaning off the Prednisone, still having IVIG treatments for the CIDP diagnosis, and cautiously spacing them further apart. i suspect if I don't have problems, this will be discontinued sometime in the coming months. I was hard to diagnose properly and just pray a lot, because I am a lot better than I was in October of 2016. I was on a walker now I walk freely with the help of AFOs for drop foot in both feet. I drive now and take water exericse 4 days a week. I so interested in having a support group to talk to with this neuropathy. My hands were affected and now are better, not normal, legs either, but so much better than in the past, so I am grateful for the strides I make and can now do housework, play in my flowerbeds, not falling anyone..just enjoying what accomplishments I have made. Please respond with your experiences, what helps, Thanks for sharing with me.
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
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
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.
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
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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/2t2low2John
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
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2 ReactionsHi Jim, that is really good news and I would be excited too! Hoping it keeps getting better and better.
John
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1 ReactionHi 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
-
Like -
Helpful -
Hug
2 ReactionsHi 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
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Like -
Helpful -
Hug
1 ReactionHi 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
-
Like -
Helpful -
Hug
1 ReactionHi 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
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Helpful -
Hug
1 ReactionThanks 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
MNA flyer July-17 (MNA-flyer-July-17.pdf)
walkasins (walkasins.pdf)
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
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1 Reaction