Peripheral Neuropathy Foundation

Posted by jenatsky @jenatsky, Feb 29 2:18pm

I just listened to. Webinar from this organization on PN prevention and learned a great deal about my illness of many years. This webinar and others are available for free on their web site http://www.foundationforpn.org. For both chronic and new sufferers I encourage you to learn and there is much resource information available too.

Interested in more discussions like this? Go to the Neuropathy Support Group.

There are oth Associations for PN as well:
Calgary Neuropathy:
https://calgaryneuropathy.com
and
Western Neuropathy
https://pnhelp.org/

Both of these are 100% Volunteer run, have webinars and support meetings. There Many people wanting to help, raising awareness (which we sorely need) and advocating for better informed care.

Linda, Calgary Neuropathy

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Help! Peripheral neuropathy - a new diagnosis and a tremendous lifestyle change that is so difficult to deal with
Both legs progressively getting more numb. I have lost balance twice in past 6 months. As the neuropathy progresses it is affecting bowel control-constipation followed by uncontrolled diarrhea when attempting to treat the constipation. Will have my first neurologist appointment in 2 weeks.
Any suggestions and/or words of encouragement appreciated
Thank you🙏

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Have you gone to PT? The last time I fell was 10/2016 on my daily walk. My right leg just went numb. Since then I’ve been to PT 3 times and currently going again. I highly recommend PT to get your balance straight.

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@newnye

Help! Peripheral neuropathy - a new diagnosis and a tremendous lifestyle change that is so difficult to deal with
Both legs progressively getting more numb. I have lost balance twice in past 6 months. As the neuropathy progresses it is affecting bowel control-constipation followed by uncontrolled diarrhea when attempting to treat the constipation. Will have my first neurologist appointment in 2 weeks.
Any suggestions and/or words of encouragement appreciated
Thank you🙏

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Hello @newnye, I would like to add my welcome to Connect along with @jenatsky and others. I also think PT for balance would definitely be helpful. There are quite a few related discussions and comments by members on balance and neuropathy that might be helpful for other suggestions. Here is a link with the search results for neuropathy and balance on Connect:
https://connect.mayoclinic.org/search/discussions/?search=neuropathy+and+balance.

Can you let us know how your appointment with the neurologist goes? Have you made a list of questions to take with you to the appointment?

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@johnbishop

Hello @newnye, I would like to add my welcome to Connect along with @jenatsky and others. I also think PT for balance would definitely be helpful. There are quite a few related discussions and comments by members on balance and neuropathy that might be helpful for other suggestions. Here is a link with the search results for neuropathy and balance on Connect:
https://connect.mayoclinic.org/search/discussions/?search=neuropathy+and+balance.

Can you let us know how your appointment with the neurologist goes? Have you made a list of questions to take with you to the appointment?

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Thank you John.
Many good suggestions at the balance link. The website has helped me prepare a list of questions for the neurologist

What a journey this is and I see I am not alone
Marie

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Do you have Autoimmune disease? Sounds like conditions very similar to mine . I have CIDP and small fine nerve neuropathy and get icing monthly treatments. No one has explained the bowel issues to me though but you are correct. It is like l am loosing the ability to go on my own to push or l get diarrhea. Seems the doctors know do little or they are telling you so little. 25 million cases of autoimmune disease currently in US and climbing…. Cause … my guess …. Immunization tinkering with vaccinations, the only people in the world that know the truth are the research labs!

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@newnye

Help! Peripheral neuropathy - a new diagnosis and a tremendous lifestyle change that is so difficult to deal with
Both legs progressively getting more numb. I have lost balance twice in past 6 months. As the neuropathy progresses it is affecting bowel control-constipation followed by uncontrolled diarrhea when attempting to treat the constipation. Will have my first neurologist appointment in 2 weeks.
Any suggestions and/or words of encouragement appreciated
Thank you🙏

Jump to this post

Same symptoms here, for many years with many misdiagnoses. Fatigue and weakness led me to learn about PA, pernicious anemia, which is treated with B12 injections. Blood tests can confirm, and it often accompanies other autoimmune disorders such as Graves, lupus etc. I’ve had it for 15 years and no one noticed. Maybe consider testing? Hope you find help soon!

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@taosmary

Same symptoms here, for many years with many misdiagnoses. Fatigue and weakness led me to learn about PA, pernicious anemia, which is treated with B12 injections. Blood tests can confirm, and it often accompanies other autoimmune disorders such as Graves, lupus etc. I’ve had it for 15 years and no one noticed. Maybe consider testing? Hope you find help soon!

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Have you had the B12 injections, and have they helped?

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@jchet

Have you had the B12 injections, and have they helped?

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One of my doctors just suggested this for me. I am definitely going to give it a try.

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@26sabrina

One of my doctors just suggested this for me. I am definitely going to give it a try.

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Please let us know. It may help some of us. I take an oral tablet of 2500mcg that dissolves under my tongue, but maybe I need more than that. Hope it works for you!😊

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