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Living with Neuropathy - Welcome to the group
Welcome to the Neuropathy group.
This is a welcoming, safe place where you can meet other people who are dealing with neuropathy. Let’s learn from each other and share stories about living well with neuropathy, coping with the challenges and offering tips.
I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by volunteer patient Mentor John (@johnbishop) and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.
We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself? What concerns would you like to talk about?
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HugInterested in more discussions like this? Go to the Neuropathy Support Group.
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Welcome @avfan, I agree with you about yet to find or hear of a successful stem cell treatment for neuropathy although I have read of folks spending a ton of money and receiving no benefits. There is another discussion on the topic with a good post by @colleenyoung that you might find helpful -- Does Stem Cell Therapy work for Neuropathy?: https://connect.mayoclinic.org/comment/205641/
Have you been diagnosed with neuropathy and considering stem cell therapy?
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1 ReactionYes I have been diagnosed with PN and spend a lot of time searching for solutions. I have not discounted Stem Cell Therepy but have not found any one who can provide testimonials that it works!
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1 ReactionHi @vicjfaoro1, I know it must be difficult watching your son suffer from neuropathy and not know how to help. Although there is no cure, there is a lot of hope for finding something that helps to relieve the symptoms. Two of the best sites I've found that will help you learn more about the condition and different symptoms are:
-- Foundation for Peripheral Neuropathy - Treatments: https://www.foundationforpn.org/treatments/
-- Neuropathy Commons: https://neuropathycommons.org/neuropathy/neuropathy-overview
Are you able to share a little more about your son's neuropathy diagnosis and any treatments he's tried?
@johnbishop
Have you noticed an improvement in your numbness since your better diet.
For whatever reason my numbness is improving.
Maybe it's the chocolate. if that’s the case it should be gone in no time.
Jake
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3 ReactionsHi Jake, I have noticed a slight improvement and I eat my share of dark chocolate 😁
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1 ReactionI think B12 is difficult to absorb oral. When I was low on B12 my doc had me on a monthly injtion and my B12 went way up.
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1 ReactionWondering if any drugs or treatment out there to help seeing my Dr soon and she doesn't know much about sfn thank you for any help.
I suffer from extreme neuropathy from a spinal cord injury due to MVA. I am 74 years of age. I live with my husband who has banished me to my room because he can’t stand my pain. I have a little dog, Rossi, who doesn’t understand that his 10 pounds feels like an elephant in high heels tromping across my legs or his little head resting on my thigh is akin to someone resting an anvil on it. I injured my thorasic, cervical, lumbar and saccral spine areas. It was indeed the Jackpot. I can kind of lurch around with the help of my rolly but can’t stand longer then it takes to brush my teeth. As far as activities go, I keep up on news events. I am a MSNBC girl. I also have carpal tunnel in stereo so I cannot hold on to anything. The area alongside my bed is like a swamp from all the coffee, water, juice and adult beverages I have spilled. After fighting with a HMO that would not treat my broken bits, I have changed insurance, much to my husband’s chagrin, and am seeing the head of neurology with the University of Washington in 11 days and 6 hours (tick tick). I would like to meet others who are in the same boat and maybe we can help each other to not go stark raving mad from constantly feeling like we are on fire.
Welcome @msmunro, It must be difficult for you not having support and understanding from your husband about the pain from your spinal cord injury. There is a post by @jenniferhunter in another discussion on spinal cord injuries that has several videos and links that you may find helpful -- https://connect.mayoclinic.org/comment/643800/
I'm glad to hear you have an upcoming appointment. I normally like to write down my questions that I am trying to get answered at an appointment, especially if it's an important new appointment. Do you have questions you are trying to get answered to take with you to the appointment?
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1 ReactionHi, I am Mary. I suffered spinal cord injuries to all four areas of my spine 5 years ago due to MVA. I have neuropathy ranging from sitting on a hot burner to having someone taking a blow tour h to me. E erything else I can kind of deal with, but this is driving me stark raving mad. Clothes hurt. Sheets hurt. I have taken to using my fur coat as a bedcover. That helps. I ice my tush and legs. I think I am going to get some help as I recently changed insurance from a for profit HMO to single insurance and have a hot date with the head of neurology at the University of Washington.in 11 days.
I hate to define myself by what is wrong with me but I am just a hot, and I do mean hot mess now.