Mayo Clinic Connect
Would. Like to find people with this issue
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?
Liked by Dee, Lisa Lucier, Connect Moderator, marystefy
@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.
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I would very much appreciate hearing about what works for you, as would a lot of us. Thanks. Arnrob
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@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.
Liked by patrick17, Lisa Lucier, Connect Moderator, Dee, thankful ... see all
Pretty awesome advice Chris @artscaping. Thank you for posting it.
You, John, are my guiding light…..so am happy that you found my comments of value.
Liked by Lisa Lucier, Connect Moderator, Dee, marystefy, Colleen Young, Connect Director ... see all
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.
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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.
Liked by Chris, John, Volunteer Mentor
@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
Liked by Chris, John, Volunteer Mentor, marystefy
Please keep us updated if finding a relief !! Good Look to you !!
Liked by John, Volunteer Mentor
I am shocked that no one can think of a dr who has been helpful to them. Is it against the rules?
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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.
Liked by marystefy, John, Volunteer Mentor
@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.
@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.
Liked by Lisa Lucier, Connect Moderator, marystefy
Me too !!
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