Mayo Clinic Connect
Would. Like to find people with this issue
Liked by Dee
I have non
diabetic and non Chemo Neuropathy .Likewise my Father, mybrother and his son. Condition extends through feet up past my knees. Also in right hand. Starting about 6 years ago and continues to progress. I have very little pain so far. I take a wide variety of Shaklee Food Supplements .No medications .
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They found that I have short fiber, long fiber, motor and autonomic PN. They have not found any cause so they are saying that the old symptoms were hereditary and that symptoms in the last year or so are from a secondary cause which is autoimmune.
@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, @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 Colleen Young, Connect Director, John, Volunteer Mentor, thankful, Dee ... see all
Pretty awesome advice Chris @artscaping. Thank you for posting it.
Liked by Dee, marystefy
You, John, are my guiding light…..so am happy that you found my comments of value.
Liked by Colleen Young, Connect Director, John, Volunteer Mentor, Dee, Lisa Lucier, Connect Moderator ... 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.
Liked by Dee, Chris Trout, Volunteer Mentor, marystefy
i have non-diabetic peripheral neuropathy. the medication my doctor has prescribed is not helping, and i am almost to a maximum recommended dose. has anyone tried CBD oil or cream for pain? what other medications besides gabapentin (or lyrica, etc) have you tried? no NSAIDS help with the pain and i do not want to take narcotic/controlled substance pain relievers.
Liked by John, Volunteer Mentor, Dee, barbarn, marystefy
my mom tried IVIG and didn't see relieft. also, it was very stressful to her heart. make sure your heart is healthy before starting!!!
Hi @trwee, welcome to Connect. I'm tagging @artscaping who has discussed CBD oils and other related treatments for neuropathy to see if he can offer any suggestions for you.
What medication has your doctor prescribed that is not helping? Have you discussed it with the doctor?
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.
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@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 John, Volunteer Mentor, Dee, Chris Trout, Volunteer Mentor, marystefy
Neurologist are using the CBD in atlanta so am sure you can find one inyour area . Ga use is limited to prescription by a Dr.
Hello all, I understand the frustration about "incurable" neuropathy. I have ND Polyneuropathy. It started 20 yrs ago has progressed into a looming presence, affecting @most of my body.
But today, I want to share a pain reliever that you can purchase at a health store w/o scrip. Totally legal. In all states ( check first)
It is CBD. Medical grade ( w/o the buzz) ,or Hemp from the marijuana plant. Cannibus. Many patients who use it daily have been cured of neuropathy. I have spoken to
Many of them. They are pain free, drug free & full of energy. No side effects. And it's affordable. The seed version is less expensive than the plant version due to extra processing.
I suggest you go to a reputable whole foods or health store & get details on what form suits you before making your selection. @Good Luck. Let me know the outcome. Elaine Dodd. ( It's a whole new world)
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To Arcticmark referencing your heat sensitive & profuse sweating due to Neuropathy. If our home is over 60 d. I perish. Does anyone know a treatment for that? It's odorless sweat "ponds of water under my feet" is embarrassing thx Elaine Dodd
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Thank you for those comments. I have tried the hemp version from 3 different suppliers (2 in drop form and one in pill form). Unfortunately, nothing worked. I would like to try the CBD from the marijuana plant itself. Would you suggest an online site where I might get a bottle to try. Many thanks.
I am in the process of diagnosis with Dr. Farhad at MGH for SFPN ( most likely autoimmune). My nerve biopsy is next week, as is an appointment with Dr. David SYstrom at BWH for SFPN from the ME/CFS pulmonary angle. I am on pain meds for what Dr. Farhad is pretty certain will be confirmed to be SFPN, as well as several issues with my spine. Very excited to hear about the pain clinic at Newton Wellesley! Is there is specific doctor there that you recommend?
Many thanks and best wishes to you as you continue to deal with this condition. 💫
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