Share this:
steeldove
@steeldove

Posts: 101
Joined: Jul 31, 2017

Foundation for Peripheral Neuropathy E-News March 2018

Posted by @steeldove, Tue, Mar 20 3:36pm

Some interesting updates, including one about gluten: https://mail.google.com/mail/u/2/#inbox/1621fbf3767535e5

REPLY

Link provided is inoperable.

@steeldove unfortunately the Foundation for Peripheral Neuropathy email Newsletters don't link very easy. You can go to their website and see most of them but not usually in the same format as the newsletter. Also, for some of the information you have to be a member to view it.

https://www.foundationforpn.org/news/

John

Liked by steeldove

Just saw this group on neuropathy.Back in nov .started getting sharp pain on bottom of my foot and ankle,after standing 5 min had to sit or lay down.After test for diabetes was ok ,had test for neuropathy ,had neuropathy.Was set to see neurolagist,before going to see him was at home ,stood up ,sharp pain started,all of sudden ankle snapped went down on floor.At hospital plate and screws put in ankle,surgeon said neuropathy helped keep pain down while in hospital,2 surgeries..Still not on feettill at least April.Still havent seen neurologist ,Will neuropathy cause problems with my healing,also have had grand mals since i was 5 years old,now 63..When brain and spine brought up started thinking of my epilepsy..

@robertjr

Just saw this group on neuropathy.Back in nov .started getting sharp pain on bottom of my foot and ankle,after standing 5 min had to sit or lay down.After test for diabetes was ok ,had test for neuropathy ,had neuropathy.Was set to see neurolagist,before going to see him was at home ,stood up ,sharp pain started,all of sudden ankle snapped went down on floor.At hospital plate and screws put in ankle,surgeon said neuropathy helped keep pain down while in hospital,2 surgeries..Still not on feettill at least April.Still havent seen neurologist ,Will neuropathy cause problems with my healing,also have had grand mals since i was 5 years old,now 63..When brain and spine brought up started thinking of my epilepsy..

Jump to this post

I have had neuropathy for several decades and was diagnosed with type 2 diabetes in 97. I experienced several symptoms not explainable with just diabetes as the underlying cause. I was diagnosed with kidney disease also by the VA at some point several years ago.. Then in 2014 I went ot Mayo to see if more issues could be discovered. After the exam by a Nephrologists I was diagnosed with not only peripheral Neuropathy but Autonomic Neuropathy. The VA had never bothered to look deeper into my complaints.. I did file a claim with VA for contact with Agent Orange as proof of its use on Okinawa became public. Of course the VA denied any connection with AO or other possible contact with chemicals that could manifest decades later ..I ran into complete stonewalling and denial of all claims.. Now time is running out on an appeal time. How convenient. There are now photos of the chemical's in containers on the beach and later, buried in the locals civilian communities. This should be brought to light for other Vets and the public that had families lost due to the negligence and cover up. Neuropathy for me continues to worsen as I age.

@robertjr

Just saw this group on neuropathy.Back in nov .started getting sharp pain on bottom of my foot and ankle,after standing 5 min had to sit or lay down.After test for diabetes was ok ,had test for neuropathy ,had neuropathy.Was set to see neurolagist,before going to see him was at home ,stood up ,sharp pain started,all of sudden ankle snapped went down on floor.At hospital plate and screws put in ankle,surgeon said neuropathy helped keep pain down while in hospital,2 surgeries..Still not on feettill at least April.Still havent seen neurologist ,Will neuropathy cause problems with my healing,also have had grand mals since i was 5 years old,now 63..When brain and spine brought up started thinking of my epilepsy..

Jump to this post

Hello @robertjr — I'm not sure any of us can give a definitive answer on neuropathy causing problems with healing since we have no medical training or background and can only offer our own personal experiences. However, I did do a search and found that it is a possibility according to the National Institutes of Health website.

Influence of Comorbidities: Neuropathy, Vasculopathy, and Diabetes on Healing Response Quality
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3842870/

John

@johnbishop

@steeldove unfortunately the Foundation for Peripheral Neuropathy email Newsletters don't link very easy. You can go to their website and see most of them but not usually in the same format as the newsletter. Also, for some of the information you have to be a member to view it.

https://www.foundationforpn.org/news/

John

Jump to this post

John, it's probably worth becoming a member, although I don't recall whether or not there is a fee associated with membership. The E-Newsletters are worthwhile.

@johnbishop

@steeldove unfortunately the Foundation for Peripheral Neuropathy email Newsletters don't link very easy. You can go to their website and see most of them but not usually in the same format as the newsletter. Also, for some of the information you have to be a member to view it.

https://www.foundationforpn.org/news/

John

Jump to this post

Premium Membership for the Foundation for Peripheral Neuropathy is $30 and is tax deductible. It gets you the newsletters and access to all the premium stuff on their website. https://www.foundationforpn.org/account/membership/

@johnbishop

@steeldove unfortunately the Foundation for Peripheral Neuropathy email Newsletters don't link very easy. You can go to their website and see most of them but not usually in the same format as the newsletter. Also, for some of the information you have to be a member to view it.

https://www.foundationforpn.org/news/

John

Jump to this post

Sorry I live on SS so that kind of expense had to stop/.

@johnbishop

@steeldove unfortunately the Foundation for Peripheral Neuropathy email Newsletters don't link very easy. You can go to their website and see most of them but not usually in the same format as the newsletter. Also, for some of the information you have to be a member to view it.

https://www.foundationforpn.org/news/

John

Jump to this post

I never paid a $30 fee and formally joined; however, I still receive their online useful E-Newsletters.

@johnbishop

@steeldove unfortunately the Foundation for Peripheral Neuropathy email Newsletters don't link very easy. You can go to their website and see most of them but not usually in the same format as the newsletter. Also, for some of the information you have to be a member to view it.

https://www.foundationforpn.org/news/

John

Jump to this post

I had initially made a donation a few years ago and had access to their website premium stuff but have not renewed, but I still receive their newsletters also. I think all you need to do is go to the website, then scroll to the bottom of the page and sign up with your email address to receive the newsletter. https://www.foundationforpn.org/

John

Capture

Thanks John I went to Mayo, in Phoenix. Not on their radar in Sept 2016 for any new treatment. I have autonomic Neuropathy and if bothers me in other ways that I have difficulty working around.

@robertjr

Just saw this group on neuropathy.Back in nov .started getting sharp pain on bottom of my foot and ankle,after standing 5 min had to sit or lay down.After test for diabetes was ok ,had test for neuropathy ,had neuropathy.Was set to see neurolagist,before going to see him was at home ,stood up ,sharp pain started,all of sudden ankle snapped went down on floor.At hospital plate and screws put in ankle,surgeon said neuropathy helped keep pain down while in hospital,2 surgeries..Still not on feettill at least April.Still havent seen neurologist ,Will neuropathy cause problems with my healing,also have had grand mals since i was 5 years old,now 63..When brain and spine brought up started thinking of my epilepsy..

Jump to this post

Thanks John.At least pain from ankle surgery not as bad because of neuropathy according to doctor..

@johnbishop

@steeldove unfortunately the Foundation for Peripheral Neuropathy email Newsletters don't link very easy. You can go to their website and see most of them but not usually in the same format as the newsletter. Also, for some of the information you have to be a member to view it.

https://www.foundationforpn.org/news/

John

Jump to this post

I have Peripheral Neuropathy.
I recently went to Florida for 2 weeks.
For the 2 weeks  I experienced less pain in my ankles legs and
back.
Has anyone else experienced the same thing.

 

I have Peripheral Neuropathy and have ankle-back pain and numbnaee. sometimes I cannot walk. I take Gabapentin 1200 3 times daily. I spent 2 weeks in Florida and was almost pain free. I live next to Canada so it is cold. Any coments?

@annmayo79

I have Peripheral Neuropathy and have ankle-back pain and numbnaee. sometimes I cannot walk. I take Gabapentin 1200 3 times daily. I spent 2 weeks in Florida and was almost pain free. I live next to Canada so it is cold. Any coments?

Jump to this post

Hello @annmayo79 — welcome to Connect. I have idiopathic small fiber peripheral neuropathy but I only have numbness and no pain associated with it. I also have trouble walking and do seem to have more problems in the winter here in Minnesota than the summer time. Cold weather and changes in humidity seem to impact my other autoimmune diseases too, mostly my polymyalgia rheumatica (PMR).

Do you do any kind of exercises to help or strengthen your legs and back to help with walking?

John

Please login or register to post a reply.