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Member Neuropathy Journey Stories: What's Yours?
This discussion was created as a place for members to share their journey with neuropathy. This will allow members to easily learn from each other what has helped them and hopefully help new members avoid some of the painful and difficult struggles some of us have faced. The following is a suggested outline for sharing your story that would be helpful for other members for comparison to their own neuropathy story.
— When did your neuropathy start? What were the symptoms? When and how was it diagnosed?
— What treatments or medications have you tried?
— What side effects have you had, if any?
Optional:
— What would you tell your best friend if they told you they had neuropathy?
— What activities have you had to give up because of neuropathy? What do you instead?
— How has your life changed socially? at work? at home?
What's your neuropathy story?
Note: If you want to ask a question for another member who has posted their neuropathy story here in this discussion, be sure to add their @membername in your post, for example @johnbishop. Your question may already be discussed in other neuropathy discussions. Be sure to check here first: https://connect.mayoclinic.org/group/neuropathy/ That way this discussion can be reserved for member neuropathy stories and hopefully make it easier to read and find similar symptoms to your own.
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Post knee replacement (diabetes and impacted nerves from an accident) ... My foot! Its so numb. Then its needles and pins. Im gonna pass on Gabapentin. My daughters friend is strung out like Jonesy on it. 😳
Hello @susanmthomas, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. Sorry to hear have neuropathy in your foot. It sounds like the cause of the neuropathy could be from several things - diabetes, damaged nerve from an accident or possibly the knee replacement. There is also another discussion you might be interested in following.
Neuropathy: Numbness only, no pain: https://connect.mayoclinic.org/discussion/neuropathy-numbness-only-no-pain/
It sounds like your doctor tried to prescribe gabapentin. Did the doctor or neurologist provide a diagnosis or what the suspected cause was?
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1 ReactionI take gabapentin 300 mgs 3 times a day for my painful peripheral neuropathy caused by chemo. I'm one of the lucky ones for whom it acts like a "happy pill."
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3 ReactionsAnyone have Small Fiber Neuropathy and need total hip replacement? I do and on tremendous pain...what to expect???
I have eaten pasta and rice supplements made from cauliflower. Didn't taste too bad either.
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2 Reactions@kenc that is another great idea. I used cauliflower for mashed potatoes and cauliflower pizza dough to decrease the number of carbs consumed until I got tired of the cauliflower taste. I occasionally still use cauliflower for mashed potatoes. Now I have developed a lower carb flour dough in place of the traditional pizza dough, bread, and hamburger and hot dog buns. There are a lot more foods available now to meet the different diets. Thanks for mentioning the cauliflower.
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2 ReactionsHi
In the last 3 years I was finally diagnose with polyneuropathy in my legs but I know that I had something wrong year way before now.in my leg. The Doctor who did the test EMG/NVC that abnormal and there was nothing that he could do. Went to my regular doctor to talk about options. They tried many different medicine even since me to other Neurologist especially when both my hands became tingle, pain and burning feeling. She did a pile of tests and she came up with the same thing that I have diabetes. The only time that is shown up is when I have the glucose test. I have been on Gabapentin for the last year now. But it seem that it not helping the amount of 600 mg 3 times a day. My doctor put me on metformin and then on Victoza early this year. Why do they send you in circles and don't want to listen. It's hard to do normal things.
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1 ReactionHello @cranea14, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. I'm sorry to hear that your doctors do not seem to be listening to you. It can seem like you are going in circles when the treatment doesn't seem to be helping.
Sometimes I think it helps to have a plan when you talk with your doctor so that you are prepared and have questions written down that you would like to get answered. There is a website that will help you plan your conversation with your doctor at your next appointment - https://patientrevolution.org/visit-tools
Another thing that will help you personally is to learn as much as you can about your diagnosis and options that are available to you. Here are 2 sites that could be helpful to learn more about your condition.
-- Neuropathy Commons: https://neuropathycommons.org/
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/
Have you been diagnosed with diabetes as well neuropathy?
Cauliflower rice is excellent! Comes frozen and already rice like.
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3 ReactionsThis idiopathic neuropathy in both feet and up beyond my knees, is really taking a toll on my life! I use a hiking stick for balance but lately I am having a great deal of difficulty walking or standing.
I am in the process of researching a motorized scooter. I have spinal issues (but the MRI indicated that my issues with my feet is not caused by this). The spinal problems would make it extremely difficult for me to place the folded scooter in my trunk, even the lighter ones.
I think we all want to maintain our independence. I am 74 years old and live alone. I still have so much living to do and this neuropathy is certainly interfering with my life style!!
How do others cope?