Living with Neuropathy - Welcome to the group

Thank you. Will do.

Yes thanks. I am 75 years old and recently for 6 months have been experiencing an idiopathic peripheral neuropathy in my feet. My blood work up is normal. Only issue that might explain the condition is an MRI of my spine that indicates a bulging disc and spinal stenosis condition. Oddly enough I have no back pain at the moment though before this started I had a bout of Sciatica that was corrected with PT. Don’t want to use drugs and have been taking B12 and ALA supplements. They have been providing some relief. Oddly enough I get relief at night when I am off my feet. I also use therapeutic oils.

Hello @alfer, Welcome to Connect. I also have idiopathic small fiber periperal neuropathy. I went 20+ years before seeking a diagnosis for the neuropathy symptoms which are numbness and a little tingling in the feet and legs but no pain. Compressed or damaged nerves due to spinal conditions can also cause neuropathy symptoms from what I've read. It's good that you have found ways that provide you some relief.

There are a couple of discussions I think you may find helpful:
-- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/
-- Myofascial Release Therapy (MFR) for treating compression and pain: https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

Have you done any research on your condition or symptoms?

I am in a lot a pain from my feet up to my knees, also my hand are affected now, and I keep droping things. I cannot get any help or sympthy from my doctors

Hi @ragtag, Welcome to Connect. I'm sorry to hear you have not been able to get any help from your doctors. It can be difficult to hang on to things with your hands when they are in pain or tingling with numbness. I'm wondering if you might fing something that would be helpful among the treatments listed on the Foundation for Peripheral Neuropathy's website - https://www.foundationforpn.org/treatments/

Have you been diagnosed with neuropathy? Have you started any treatments?

Upcoming Webinar - Foundation for Peripheral Neuropathy
Mon, Jun 27, 2022 12:00 PM - 1:00 PM CDT

FPN Webinar: Anti-MAG Peripheral Neuropathy: An Overview with Dr. Richard Lewis, MD
Anti-MAG peripheral neuropathy (Immunoglobulin M(IgM) Anti-Myelin Associated Glycoprotein Peripheral Neuropathy) is a rare autoimmune variety of peripheral neuropathy. In this type of PN, a person’s own immune system attacks cells that are specific in maintaining a healthy peripheral nervous system. As these cells are destroyed by antibodies, they lose function and create problems in both sensory and motor function.

FPN is pleased to welcome Dr. Richard Lewis, MD from Cedars-Sinai Medical Center to present on this rare form of neuropathy. In this program, Dr. Lewis will provide a scientific overview of anti-MAG PN, from diagnosis to treatment and everything in between. Plenty of time will be allotted for questions from those that are able to join this session live.

Register for the Webinar - https://register.gotowebinar.com/register/7893951851494374670

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.

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

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.

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?