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Ann broussard
@user_ch98d0b5c

Posts: 17
Joined: Jun 03, 2018

People with non diabetic neuropathy

Posted by @user_ch98d0b5c, Mon, Aug 6 10:30am

Would. Like to find people with this issue

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John, Volunteer Mentor
@johnbishop

Posts: 2278
Joined: Mar 22, 2016
Posted by @johnbishop, Mon, Aug 6 11:38am

Hello @user_ch98d0b5c — I read from your earlier post that you do not know what the cause is for your peripheral neuropathy. I also have idiopathic small fiber peripheral neuropathy. They suspect hereditary but don't know. You also mentioned you have an upcoming appointment at John Hopkins with Dr. Hoke in September. I know it must be frustrating waiting and wanting some answers.

@user_ch98d0b5c have you found anything that helps with the pain?

I've found that I always wear socks, even at night. I mainly do this because I can't tell if my feet have been injured when I step on something walking around the house. I've found that socks made with bamboo fiber are really soft, stretchy and very easy to put on and take off. I guess they probably wouldn't help you if you can only wear flip flops. Have you tried any kind of shoe that doesn't cause you pain?

I was not sure by the title of your discussion if you were trying to locate members who do not have diabetic neuropathy or that do have diabetic neuropathy?

John

Chris
@artscaping

Posts: 138
Joined: Jul 11, 2017
Posted by @artscaping, Mon, Aug 6 2:43pm

@user_ch98d0b5c – Well, I fit that condition…idiopathic peripheral neuropathy. Unlike John, mine comes with a ton of pain. The possible cause may be previous injuries like falling off horses and down mountains. I am happy to offer what does and does not work for me to provide some relief. Just let me know and I can send you a private message or post for all.

arnrob
@arnrob

Posts: 9
Joined: Aug 11, 2016
Posted by @arnrob, Mon, Aug 6 6:02pm

I would very much appreciate hearing about what works for you, as would a lot of us. Thanks. Arnrob

Liked by marystefy

Chris
@artscaping

Posts: 138
Joined: Jul 11, 2017
Posted by @artscaping, Thu, Aug 9 4:39pm

@arnrob, @marinelastef, @johnbishop and anyone else on a journey through the progressive condition of idiopathic polyneuropathy and idiopathic small fiber neuropathy. You asked to know what works for me. You may want to look back at some of my other posts for specifics. However, things change and now, after about 8 years, I realize that I need to modify and change treatment options as my pain increases in intensity and frequency and my mobility decreases. Here are seven tips: 1. A diagnosis is important so… go through the muscle tests, an MRI, blood panels and most importantly the skin test which was, for me, the most revealing and confirming. 2. Find a neurologist who can be your provider partner. 3. Be religious about following prescribed medications and activities so that the feedback will be meaningful and dosage modifications can be made. 4. As your activity level decreases do the same with your food intake. As my provider reminds me….calories in can only equal calories out and portion control is the best way to get over this hurdle. You will find that after a while, saying "no thank you" becomes much easier. I think they call that getting rid of habit energy. Besides, pain and food just don't pair well. 5. Let go and grieve for the things you used to be able to do but now cause too much discomfort or for which you have to pay the price afterward. Then find new activities. Do some of those things you always wished you had time to do. 6. Ask for help when feeling unstable or unable. Use a walking support to avoid falling when one or the other of your legs has decided to take the day off. 7. Stay in touch with family and friends. Don't wear them out with a recitation of your discomforts…..just express gratitude for the fact that they care. That's enough for today. Let me know if you have specific inquiries and I will respond from my perspective and experience.

MENTOR
John, Volunteer Mentor
@johnbishop

Posts: 2278
Joined: Mar 22, 2016
Posted by @johnbishop, Thu, Aug 9 4:43pm

Pretty awesome advice Chris @artscaping. Thank you for posting it.

Liked by marystefy

Chris
@artscaping

Posts: 138
Joined: Jul 11, 2017
Posted by @artscaping, Thu, Aug 9 4:50pm

You, John, are my guiding light…..so am happy that you found my comments of value.

MENTOR
John, Volunteer Mentor
@johnbishop

Posts: 2278
Joined: Mar 22, 2016
Posted by @johnbishop, Thu, Aug 9 5:02pm

Chris, I'm still trying to put together my notes, my wife's notes and her sister's notes from the Stem Cell meeting at the MN Neuropathy Association last Saturday. It was a good meeting with lots of hope if you are a cancer patient but they still haven't broken the code for the Schwann cells yet which is the last step according to the speaker. I hope to have them together and will post them in the next day or so.

John

Liked by Dee, Chris, marystefy

marystefy
@marinelastef

Posts: 44
Joined: Aug 04, 2018
Posted by @marinelastef, Thu, Aug 9 11:54pm

Thank you for taking the time to share !! Good lock finding the right medications. I’ve been trying and still sourcing for the right ones for me too.

thankful
@thankful

Posts: 104
Joined: Apr 27, 2016
Posted by @thankful, Fri, Aug 10 2:07am

@artscaping– Wow! just loved your humbleness & transparency. Excellent advise in your 7 points! All of us can put several of those points to work in our everyday lives whether we are dealing with neuropathy or not. Thank you! Jim @thankful

marystefy
@marinelastef

Posts: 44
Joined: Aug 04, 2018
Posted by @marinelastef, Mon, Aug 6 3:19pm

Please keep us updated if finding a relief !! Good Look to you !!

Ann broussard
@user_ch98d0b5c

Posts: 17
Joined: Jun 03, 2018
Posted by @user_ch98d0b5c, Mon, Aug 6 3:23pm

I am shocked that no one can think of a dr who has been helpful to them. Is it against the rules?

Liked by marystefy, barbarn

arnrob
@arnrob

Posts: 9
Joined: Aug 11, 2016
Posted by @arnrob, Mon, Aug 6 6:05pm

I can testify that, in the 3 states in which I lived, not one doctor could come up with ANY solution to ease my pain, although one in particular worked her heart out trying.

barbarn
@barbarn

Posts: 44
Joined: Mar 25, 2018
Posted by @barbarn, Mon, Aug 6 6:25pm

@user* I've been thinking about no one being able to think of a dr who has been helpful to them – and – there must be so many kinds of PN, so many causes, there must be equally as many treatments, and to find the one that works for a particular individual might be like looking for the proverbial needle in haystack? or, perhaps as many have said – there is no treatment!!! You do have to be your own advocate – keep looking, trying new things, sharing what you have learned and what others have learned.

MENTOR
John, Volunteer Mentor
@johnbishop

Posts: 2278
Joined: Mar 22, 2016
Posted by @johnbishop, Mon, Aug 6 7:14pm

@user_ch98d0b5c, I don't believe it's against the rules to name a doctor who has helped you in some way. I am thinking it's more along the line of what @barbarn is suggesting. There are so many types of PN and no one treatment works for everyone. That said if I found a doctor that "fixed" the numbness in my PN I would certainly give them the credit. I have found supplements that help but they do not cure PN and they may or may not work for everyone.

So I would just like to add, keep asking questions and sharing what you find if something works for you. We are all on this journey together.

John

marystefy
@marinelastef

Posts: 44
Joined: Aug 04, 2018
Posted by @marinelastef, Mon, Aug 6 3:56pm

Me too !!

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