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?

Interested in more discussions like this? Go to the Neuropathy Support Group.

Profile picture for steeldove @steeldove

FDA approves polyneuropathy treatment for adults
The FDA has approved Amvuttra, an RNA interference therapeutic for the treatment of polyneuropathy of hereditary transthyretin-mediated amyloidosis in adults.

Amvuttra (vutrisiran, Alnylam Pharmaceuticals) is administered through subcutaneous injection once every 3 months, the company said in a press release. The FDA approval was based on positive results from a global, randomized phase 3 study, which assessed the safety and efficacy of vutrisiran in participants with hereditary transthyretin-mediated (hATTR) amyloidosis with polyneuropathy.

Source: Adobe Stock.
Source: Adobe Stock.
“Twenty years ago, Alnylam was founded with the bold vision for RNA interference to make a meaningful impact on the lives of people around the world in need of new approaches to address serious diseases with significant unmet medical needs, such as hATTR amyloidosis,” Alnylam CEO Yvonne Greenstreet, MBChB, said in the release. “Today, vutrisiran has the potential to change the standard of care for people living with the polyneuropathy of this devastating disease.”

According to the release, 164 patients with hATTR amyloidosis were randomized 3:1 to receive 25 mg of vutrisiran by subcutaneous injection once every 3 months (n = 122) or 0.3 mg/kg of patisiran via IV infusion once every 3 weeks for 18 months (n = 42). The vutrisiran group was also compared with a placebo group (n = 77).

Among 114 participants who received vutrisiran, there was a 2.2-point mean decrease, or improvement, in the modified Neuropathy Impairment Score +7 after 9 months of treatment, compared with a 14.8-point mean increase reported in the placebo group. In addition, 50% of patients who received vutrisiran experienced improvement in neuropathy impairment compared with baseline.

All safety and tolerability endpoints were met after 9 months of treatment with vutrisiran. The most reported adverse events were arthralgia (11%), dyspnea (7%) and a vitamin A decrease (7%).

“We are so thankful to the patients, families and investigators involved in making Amvuttra a reality for the hATTR amyloidosis community,” Greenstreet said.

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I find this interesting since I have symptoms similar to those of my father and one sister.

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I’m 87 years old and have tingling and loss of feeling in my fingers. Does anyone have experience with this condition. I would like to hear any experience with this.

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Profile picture for councilman @councilman

I’m 87 years old and have tingling and loss of feeling in my fingers. Does anyone have experience with this condition. I would like to hear any experience with this.

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Welcome @councilman, I'm 79 and share your experience. I have small fiber peripheral neuropathy. I shared my story in another discussion here – Member Neuropathy Journey Stories: What's Yours? – https://connect.mayoclinic.org/comment/310341/.

Have you been diagnosed with neuropathy?

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Profile picture for John, Volunteer Mentor @johnbishop

Welcome @councilman, I'm 79 and share your experience. I have small fiber peripheral neuropathy. I shared my story in another discussion here – Member Neuropathy Journey Stories: What's Yours? – https://connect.mayoclinic.org/comment/310341/.

Have you been diagnosed with neuropathy?

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I was diagnosed with neuropathy over ten years ago. My neurologist has continued to tell me there is no treatment for my symptoms. I have some numbness in my feet and a little in my fingers. My major problem is balance, which has gotten significantly worse in the last couple of years. I now have to use a walking stick any time I go out and sometimes use a rollator. I go to a new neurologist in July(who has recently come to Duke after six years at Mayo) and hope she can tell me something that will help. Have any of you found anything that helps with balance issues?

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Hi Coleen, My name is Mary Munro. I am 74 years of age. I live in the Pacific Northwest. My neuropathy stems from a motor vehicle accident in 2017. I have nerve damage in all areas of my spine, but so far, neuropathy only in my legs.
I tried various materials, thread count, weaves of materials on which I could rest or cover my legs and not feeling like I was taking what was already akin to being ablaze, and adding a bed of nettles . Nothing worked. Bedding hurt. Clothes hurt. I asked my medical team if people went mad with this. There was no respite in sight. Then one day, I saw possible salvation in a fur coat I had hanging in my closet. I tried it. The fur felt glorious against my skin. It soothed rather than irritated. I could pull the sides of the coat up over my legs if they were chilled. The fur did not feel like I just dropped an anvil on my legs. This was heaven.
Then I started thinking about the many other suffers of neuropathy. How could I get them the same relief? Not everyone just happens to own a fur. What if this is a fluke and doesn’t work for anyone else but me? I have seen the use of mouton for bedridden patients so as to avoid bedsores. My idea has some already proven merit.
The thing with using my coat is that there isn’t the right kind of structure to continue without harming the pelts of fox. There are furriers that will convert a coat into a blanket or stole, but the cost is around $1,000. The cost of a fur blanket is around the same . The fur is then attached to a batting that provides a sturdy enough structure to the many pelts that make up the piece. With a coat, there is just a lining.

I have a mink coat that I will donate to someone who would like to try this to see if they get the relief I did. Then perhaps I could go about getting furs donated and funds to convert to blankets. “Furs for Nerves”. If you have a candidate or if someone from the forum wants to volunteer, I can ship it out. They can try it for a while, see if they get relief. Then perhaps a start on getting donated furs to individuals.
I am not making any sense.

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Profile picture for msmunro @msmunro

Hi Coleen, My name is Mary Munro. I am 74 years of age. I live in the Pacific Northwest. My neuropathy stems from a motor vehicle accident in 2017. I have nerve damage in all areas of my spine, but so far, neuropathy only in my legs.
I tried various materials, thread count, weaves of materials on which I could rest or cover my legs and not feeling like I was taking what was already akin to being ablaze, and adding a bed of nettles . Nothing worked. Bedding hurt. Clothes hurt. I asked my medical team if people went mad with this. There was no respite in sight. Then one day, I saw possible salvation in a fur coat I had hanging in my closet. I tried it. The fur felt glorious against my skin. It soothed rather than irritated. I could pull the sides of the coat up over my legs if they were chilled. The fur did not feel like I just dropped an anvil on my legs. This was heaven.
Then I started thinking about the many other suffers of neuropathy. How could I get them the same relief? Not everyone just happens to own a fur. What if this is a fluke and doesn’t work for anyone else but me? I have seen the use of mouton for bedridden patients so as to avoid bedsores. My idea has some already proven merit.
The thing with using my coat is that there isn’t the right kind of structure to continue without harming the pelts of fox. There are furriers that will convert a coat into a blanket or stole, but the cost is around $1,000. The cost of a fur blanket is around the same . The fur is then attached to a batting that provides a sturdy enough structure to the many pelts that make up the piece. With a coat, there is just a lining.

I have a mink coat that I will donate to someone who would like to try this to see if they get the relief I did. Then perhaps I could go about getting furs donated and funds to convert to blankets. “Furs for Nerves”. If you have a candidate or if someone from the forum wants to volunteer, I can ship it out. They can try it for a while, see if they get relief. Then perhaps a start on getting donated furs to individuals.
I am not making any sense.

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Hi @msmunro, We removed your personal email address from your message above. We recommend not posting personal contact information in the public forum. You can use the secure private message function to exchange contact information with another member.

To send a private message to another member, click on their @membername which takes you to their profile. Then click on the Send a private message link at the bottom of the members description.

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Thank you.
I invite anyone who suffers from a constant burning sensation with their legs and would like to see if resting them on a fur gives them some relief to post an email through the Mayo Clinic protocol. I have a spare that I would be happy to send to you. I would only ask that you share your experience with me to see if this might be a road to some relief to the thousands of neuropathy suffers. There are a lot of old fur coats hanging in closets that could be of help.

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Hello , I wasn’t sure if this is the right group for small fiber neuropathy also.. I’m really struggling this is all new to me since March/April..

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Profile picture for councilman @councilman

I’m 87 years old and have tingling and loss of feeling in my fingers. Does anyone have experience with this condition. I would like to hear any experience with this.

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Yes. My fingertips are numb. I was told it is due to carpal tunnel. It makes my hands very clumsy. I knock things down or spill because I don’t know where they are. Does that make sense to you?

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Profile picture for msmunro @msmunro

Yes. My fingertips are numb. I was told it is due to carpal tunnel. It makes my hands very clumsy. I knock things down or spill because I don’t know where they are. Does that make sense to you?

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I think mine is due to neuropathy. Going to experiment with stimulation treatments. I’ll post results.

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