Living with Neuropathy - Welcome to the group

I have the same ~ after going to numerous doctors and having all test run just to hear, we cannot pinpoint what you have peripheral neuropathy maybe~
I have found a neuropathy doctor/chiropractor which has some interesting information. He wants me to go on a plan which sounds good but man it is expensive.
I do not understand why insurance will not cover this.
It seems to be my only option to heal but once again insurance says no

@shanes123
I'd save my money if I were you. Maybe your insurance doesn't cover it because it hasn't been proven effective.
Jake

Be cautious when dealing with electronic snake-oil sales persons!

THIS COULD BE A GAME CHANGER!!

Vertex Pharmaceuticals of Boston announced Tuesday that it had developed an experimental drug that relieves moderate to severe pain, blocking pain signals before they can get to the brain. It works only on peripheral nerves — those outside the brain and the spinal cord — making it unlike opioids. Vertex says its new drug is expected to avoid opioids’ potential to lead to addiction.

The company reported that it had completed two randomized studies, the first in 1,118 people who had abdominoplasties and the other in 1,073 people who had bunion surgery. The two procedures are commonly used in studies of people with acute pain, the temporary kind that is brought on by something like a surgical procedure and is likely to ease with time.

In its clinical trials, Vertex measured the drug’s effect with a standard pain scale in which patients rated pain severity from 1 to 10, with 10 the most severe. Those taking its drug had a statistically and clinically meaningful reduction in pain, it reports. A third study looked at safety and tolerability of the drug in people experiencing pain from a variety of conditions.

Buoyed by the results, which are yet to be published or presented at a meeting, Vertex plans to apply to the Food and Drug Administration by midyear for approval to market the drug, a pill that, for now, is called VX-548.

“This has the potential to be a blockbuster,” said Dr. Stephen Waxman, a professor of neurology, neuroscience and pharmacology at Yale. Dr. Waxman was not associated with the study but was paid a speaking honorarium by the company. He predicted that the Vertex drug would be only the first foray into this new area.

“I like to think it’s the beginning of nonaddictive medicines for pain,” he said.

For now, most people needing relief from moderate to severe pain have two options: drugs like ibuprofen and COX-2 inhibitors, or opioids. The drugs like ibuprofen are not very effective, and the opioids, as is well known, can be addictive because of the way they work. There is no way to separate the effects of opioids — pain relief — from the side effects: changes in thinking, cognition, energy and emotions.

The opioid crisis, one of the gravest public health concerns in the United States, began more than two decades ago and included people who started out taking the drugs for pain but became addicted. As states tightened regulation of prescription opioids, many turned to illegal street drugs like heroin and fentanyl. Though doctors are more cautious about prescribing opioids now, many still do so because there are few alternatives.

Efforts to develop a new class of pain-treating drugs began in earnest in the 1990s. Researchers asked if there were sodium channels that were specific for peripheral nerves. These are portals that open to send pain signals from the nerves to the brain and then close to stop transmitting. If there were portals that only controlled signals from peripheral nerves, that suggested the possibility of drugs to block them and control pain without affecting the brain, and without causing addiction. Pain might be stopped at its source.

So researchers began scouring the globe for people who had genetic mutations that prevent peripheral nerves from transmitting pain signals, or that made peripheral nerves signal pain nearly constantly. If they found those mutations, the genes involved could be targeted with drugs.

Eventually, they found both types of mutations.

In Alabama, one gene mutation caused a family to have a condition known as burning man syndrome that puts peripheral nerves into overdrive. People feel a searing pain that some have said is like hot lava inside them. Any sort of warmth can bring it on — wearing socks or a sweater or going outside when it is 70 degrees Fahrenheit.

“It’s a tragic disease,” Dr. Waxman said. “It literally drives some to suicide.”

After years of searching, researchers found people with a gene mutation that led to the opposite effect. The discovery began with a teenage boy in Pakistan. He made money by walking on coals or cutting himself with sharp blades in street performances. His family members had the same mutation, with “painless fractures, painless burns, painless tooth extractions and painless childbirth,” Dr. Waxman said.

It’s not that people with such mutations felt less pain, he said; “they did not feel any pain.”

Those mutations and subsequent research led researchers to discover that two genes are needed to transmit pain, known as Nav1.7 and 1.8. The race was on to find a drug based on one of those genes.

“Every big company worked on them,” said Dr. David Altshuler, chief scientific officer of Vertex Pharmaceuticals.

But it turned out to be a difficult task to find a drug that worked. Vertex, Dr. Altshuler said, spent 20 years on the project.

The result is VX-548. It inhibits Nav1.8, temporarily blocking the gene so it cannot make the protein needed for the nerves to transmit pain signals.

The studies involved people with acute pain. But the company is now studying people with chronic pain from diabetic peripheral neuropathy and patients with a type of back pain, lumbosacral radiculopathy, caused by impairment or injury to a nerve in the lumbar spine.

For now, the Vertex drug, if approved, would only be used on a fairly narrow range of conditions. The greater need is for nonaddictive drugs to control chronic pain, and while studies are underway, for now only those with acute pain would benefit.

The post Experimental Drug Cuts Off Pain at the Source, Company Says appeared first on New York Times.

Thanks Colleen for moderating this group.

I have prediabetes and was overweight. I am currently experiencing cramping and stabbing pain in feet. EMG negative. It is neuropathy of some type.

Thanks highdesertdweller with information on Vertex. I also would invite you to Google Axon Therapy by Neurolance. This company trialed using high energy, on par with a MRI, magnets, and have FDA clearance for use in VAs for diabetic neuropathy and other indications. The company is excited, but will it work in larger populations?

Hello all my name is Joe. In December of last year i had a spinal fusion surgery with a disc replacement. Was doing well and although still experiencing some nerve issues and foot drop in my right foot was getting better. In July o 2023 I started experiencing worsening foot drop in my right foot and also new foot drop in my left as well as numbness from my knees down in both legs. I fell a couple of times due to balance issues that developed and weakness in the same subject areas. I did have pain hamstrings down to right side of both calves. Went to neurosurgeon and got some steroids for pain as well as epidural shots. Pain went away but numbness and balance issues persisted. Had an MRI of lumbar as well as thoracic and cervical and neurosurgeons (2) indicated that there was nothing that should be causing this had an EMG and lots of blood tests and Blood tests did not indicate anything troubling. Went to a spine specialist and working through that. Looking for anyone with the same situation or assistance as you can imagine I am concerned.

My name is Larry. I have been suffering with Nueropathy for 12 years. I do not have Diabetes so the cause has not been diagnosed. I have also had two unrelated spine fusions that has been diagnosed as fail back surgery syndrome.
I have been through all of the drugs that are normally used to treat the nueropathy, many of them several times. I have also tried physical therapy with no change to the muscle twitching, burning feet and just general numbness and pain. Absolutely nothing had helped enough that I could tell there was an improvement.
I would like to share something that was discovered while treating a condition I have found is sometimes triggered by chronic pain (depression). After I started showing signs of depression from the pain I was prescribed Venlafaxine 150mg per day for the depression symptoms. After one day of starting the medication I noticed a huge improvement in the burning in my feet. After three months of taking it the improvement continues. This is the only thing out of years of trying different medications that has had any effect on the problem. I am not recommend anyone start a depression medication that may not be listed for nueropathy treatment. I just wanted to say what has given me meaningful relief from the pain. Good luck with everyone's struggle with nueropathy.

I am a 72 year old women who has had neuropathy for just a couple of years. So is it true that there is no cure for this. I don’t wanna lose my feet has anyone had to do that. Is Nerve Savior just another scam

Hi Larry @lmo, Welcome to Connect. Thanks for sharing your experience and what has provided some meaningful relief with the neuropathy symptoms. I also have neuropathy but just the numbness and some tingling. Learning as much as you can about the condition and what treatment options are available that might provide relief is the best thing a person with neuropathy can do to help themselves.

If you haven't already seen the Foundation for Peripheral Neuropathy website, you might find it helpful for other suggestions on living well with neuropathy - https://www.foundationforpn.org/living-well/.

I am confused? I have all the symptoms of PN but only during the day! When I go to bed my symptoms stop. Very odd but happy. Every morning the day starts fresh and only after I am on my feet do the symptoms return. Anyone have that condition. I believe it’s coming from my back! I have been diagnosed with spinal stenosis but my back doesn’t hurt? Any thoughts on this? My symptoms are all in the foot toes and balls of my feet. They feel like someone is grabbing them, with some tingling and loss of sensation.