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Just watched this, which is so fascinating and very helpful. Thank you! (from Chris W, who is a college classmate of Will's and Maxey's)

Honestly dont even understand the point of this can ya actually help us??? not all of us are old im in my 20's and cant believe i am suffering for the past 3 years...Also any neuropathy is a SEVERE like wtf.. i dont care if its LARGE OR SMALL its fucking brutal

Very helpful. I’m not sure my neuropathy is peripheral since I’m not diabetic and don’t have numbness and tingling in feet. My neuropathy is posterior and upper body arms and hands and can shut down into tough but mostly upper body probably from spine

I have had nerve conduction tests many times and they always come back not conclusive. Why don't they just go straight to a nerve biopsy? I have suffered with what seems like CIDP for years. my life is ruined while neurologist fiddle around.

Antibiotics caused mine. Fluroquinolone poison

what about natural treatments??? no mention of magnesium oil . and reducing sugar???. have you read the book "SUGAR CRUSH , How to reduce Inflammation,reverse nerve damage and reclaim good health" by Dr. Richard Jacoby a leading Nerve surgeon ...c'mon man!! Why do doctors think drugs can solve everything

I have had this for 3 yrs. Many Drs tests research therapy etc. im convinced SFN is at least 75% a psychological malfunction in sensation and pain processing. Its not due to shredded damaged ruined nerves lol. We can heal ourselves beginning with: there’s nothing wrong And believing that

I am sure Dr. Staff does not monitor comments on his presentation , but I am wondering while he did not address some of the drugs in research for PN; I.E. Engensis, pirinzipine and the drug from Vertex Pharmaceuticals.

I can't seem to be able to play this video for some reason?

I had one Astra-Zeneca and now I'm diagnosed with CIDP

Thank you!

Thank you very, very, very, very, very much! More please!

This has been amazing and helpful information. How can I get a copy of today's transcript? Thank you.

You explained this very well.

This is important info., thank you. My (now) 79-year-old husband was told he has neuropathy more than 20 years go (this was at a small rural hospital clinic.) But there was no additional options presented, no referrals given so he went back to his normal life, ignored this and just never pursued any treatment which I now understand was not the best option to take. No neurologist or sports medicine physician has ever treated him. We have been told "no treatment, no cure, see you in 6 months." Why do we even bother to keep these appointments? USELESS in my opinion! There USED to be pain clinic in our town but that is no longer open. It's like there is no real help out there and no one knows what to do. We are 100% on our own with this. The closest thing we have had is a (now retired doc) who thought he might have Charcot Marie Tooth Disease (high arches, hammer toes, and neuropathy.) We do forget that our bodies are meant to detoriate and die and that humans do not live forever.... The only thing we have been able to do is find the best shoe support possible as most medication make his stomach upset. He refuses to use a cane. he also has cognitive decline and gave up driving 6 years ago. He "cares" because he is in pain and can no longer the active things he used to do but with cognitive decline he does not have the ability to follow through with research, appointments, medication etc. NOTE: My holistic/massage therapist uses a RED LIGHT MATT on her husbands neuropathy on his feet every night before bed. She says this has helped him. I use CBD cream with arnica for my own knee pain. This helps me to sleep at night when my knee is throbbing....

Thank you.

My now 79 year old husband has extensive neuropathy in his toe, feet and legs. I took him to Allegan Hospital about 20 years ago when he first began to experience tingling in his feet. The hospital tested his feet with a sharp instrument and said, 'Yes you have neuropathy." They offered no treatment to him and so we basically ignored this issue and moved forward in our life. I now know this was a mistake on our part. Later we found an integrative physician and she found out that he had insulin resistance (now remedied.) We totally changed our diet and lifestyle. These changes have not the nerves in his legs but it has helped her rest of our body in many ways,

Dr Khella, I thank you so very much for your time, your detailed explanations and your presence in the field. Your perspective and experience is extremely helpful and comforting to me as I've had extreme damage over the past three years and undiagnosed (and or believed) within my local medical community. I did have an extensive EMG by a Specialist and director of a lab at a large medical University and he recommended me to Stanford for further care. You have calmed my concerned and curious mind and I sincerely thank you, Tara

Alcohol neuropathy go hand ans hand with CIDP? I don't fully understand this... My husband was diagnosed with CIDP but he was an alcoholic for many years

The only hopeful drug that I know of was completing Phase III studies is called Engensis. 2 of the Phase III studies achieved the Primary Endpoint of the study and one did not. I don’t know if the company plans to go ahead with seeking a DPN indication or not. I also do not know of any drug in research that focuses on nerve regeneration. In short, the only drugs in research are once again focused on symptom relief. We don’t need palliative treatment as much as we need something that actually reverses damage and halts further damage. It will likely be many years before we are even close to that goal.

IooooL ok iii ilia

Great to see that someone is working on PN. However, the doctor never mentioned neuropathy caused by fluoroquinolones which I suffer from....

These co, are false and sumit false info.

How do I get my husbands neurologist to order the test so our Medicare/BCBS PPO covers this DNA test?

What treatment? My husbands neurologist says his," There is no treatment and no cure. See you again in six months."

Thank you, I learned quite a bit from this!👏👏👏👏

Thanks

Thanks

The whole video is about accepting our lame, broken, patient--buck passing healthcare system, and laying down to get our end-affairs in order, because our Doctor certainly won't make time to see us! I wasted 6 weeks doing telehealth with a Nurse Practitioner who said she could help me when she merely held my hand when i should have been seeing a hands-on person with real ability to make progress happen for me! She rven said she could take care if my medical meeds, even to write a bridge prescription if I wasnt well enough to leave the house...but then, she recanted, 6 days later when I was nearly out of crucial pain prescriptions! She knew for 5 days that she'd no longer be able, but didn't bother to call and tell me, leaving me to scramble to line up a medical transport to my "real" Doctor who thank God, made time for me! And, just "any" Neurologist Won't suffice, for a PN patient! I had new symptoms marching through my hands and mine, whom I'd just had positive EMG results with during an office visit, would not even return my calls about the horrific pain and creepy sensations! He didn't have Any plan of Treatment for me, probably due to me having Medicaid, not Private, Insurance! All these things are Time-robbing, Cure-stealing, tragic and needless delays in helping me, that will probably result in total loss of feeling in my hands. I will need s nursing home instead of my own house and pets. My kids are already distancing themselves because its too hard to see me. My ex says he cant pay for my outrageous caregiver costs anymore but i cant even take care of my hygiene! ohhh, this site is way behind speed and should yake notes from Myositis.org, an excellent resoutce for an even more rare disease. PLEASE!

I am losing my ability to use my hands! I don't need a repeat of a 7th grade science class! You're wasting both patient and Healthcare professional's time on these "below basic" info. Smaller dinnerware? Nevermind that, because not being able to hold silverware or biting your finger instead of your sandwich, or watching your glass of milk flop into your lap due to hand drop; these are Excellent ways to lose weight!! OMGosh, you're repeating such.basic, well-known information that I'm sure you've lost 3/4 of your audience! Those left are probably the kids made to keep watching, while the adults sneak off to have those 2 glasses of wine you are giving permission for! Take the stairs? I can't even stand long enough to transfer onto a toilet, or get into my wheelchair, which I was not bothered by 1 year, 4 months ago; that was when my healing ankle fracture got overpowered by Peripheral Neuropathy! But, it took me that whole time, pouring over NIH, Mayo, Cleveland Clinic, and lastly PubMed sites, to try to reconcile my symptoms with a disease. You're wasting the last precious moments of someone's life! Taking years away from a son or daughter's time with parent, grandparents, or other treasured adult mentors because their Doctor, Neurologist, was not familiar enough with treating PN or halting the steamroller of progression! Pardon this 63 year old's frustrating at you, for wasting my time with "yada yada basic info". Please tell people that Peripheral Neuropathy is actually a symptom, a side effects of an even Worse condition they may not know about yet. Like an autoimmune disease, or a tiny tumor, or a missing vitamin or nutrient that could have been started months earlier. Gah!!

Thanks

Have we considered acalabrutanib monotherapy for anti- mag antibody neuropathy? Or the PPPG decoy that is in research

4 Neurologist dx me Cidp with spinal tap &,nerve conduction I met all criteria. After 2 years Hizentra subq regained my strength and new dx changed dx to sensory ganglionitis ( I disagree) he took me off Hizentra. Would agree with changimg dx because I regained strength with all other systems the same . Been extremely hard to find experience CIDP Doctor

Is there evidence of vitamin B6 toxicity caused by vitamin regimen and or high B6 foods as a plausible cause for small fiber? A high B6 plasma lab result has peaked this question.

How effective is peripheral nerve stimulation ?

Where can i get more info

I have horrible nerve pain have had for years. I have all the symptoms sryogens syndrome but my lip biopsy was negative. Have had a EMG it was negative

How is Hereditary PN classified in these research studies?

How come, nobody is going to Congress demanding money to find a cure off of this debilitating disease?

I was diagnosed in 1999 with idiopathic peripheral neuropathy. Again in 2012. I was also diagnosed with diabetes Type 2 in 2012 and had a heart attack in 2019. For neuropathic pain relief I was started on Gabapentin and Cymbalta. Because of horrid cognitive side effects, Cymbalta was switched out for Effexor. Unfortunately, these cognitive side effects didn't stop, so I stopped using them. I've been taking the following for the above diabetes and LDL: Ezetimibe/Rosuvstatin-Mepha 10 mg/10 mg - 1-0-0-0 (Mo,Mi,Fr,So) Forxiga 5mg - 1-0-0-1 Metfin 1000 mg - ½-½-0-1 Aspirin Cardio 100 mg - 1-0-0-0 Since about 2014 I've been taking instead of the Cymbalta/Effexor & Gabapentin: R-Lipoic Acid 300 (240) mg - 1-1-1-1 Acetyl-L-Carnitine 750 mg - 1-1-0-1 N-Acetyl Cysteine (NAC) 1000 mg - 1-0-1-0 Omega 3 (fish oil) 1000 mg - 1-1-1-1 Borage Oil 1000 mg (GLA = Gamma Linolenic Acid) - 1-1-1-0 Magnesium 100 mg - 1-1-1-1 The above have helped some. I came to use these through exclusionary processes. IOW, I'd take a substance for a while, noting sensations. Then I'd stop and see what happens. These “passed” this exclusionary process. If I noticed an increase in severity of symptoms when stopping a substance, I could conclude, that it was actually helpful when I was taking it. I then added Benfotiamine starting on 15.08.2023. Helped greatly, most overt pain gone, but numbness still prevalent (time of writing 08.10.2023). Some stomach ache if dosage is over 150mg, so I take 100/150mg 1-1-0-0 / 150mg 0-0-1-0 and 250mg before going to bed (0-0-0-1) - I don't get stomach ache before going to sleep or during the night. I then added on September 5, 2023: Folic acid 1.7 mg 1-1-1-0 Biotin 5 mg 1-0-0-0 Methylcobalamin 1500 mcg 1-1-1-0 Vitamin B6 P5P 25mg 1-0-0-0 I’ve been keeping a daily diary since August and adding the vitamins. Basically I’ve noticed: No more burning sensations, no more cramps, no more shooting pain. Numbness has receded from mid-thigh to around mid calf. The vice grip on my feet has also receded about 80%, is often fully absent. Fatigue in my legs, especially when walking has disappeared. Balance is improving. This is a summary of my neuropathic sensations as of 18. November 2023, 15 weeks after having started the added neurotropic B-vitaimes (plus). I should also add, that in 2012 the electro-conductivity tests showed more severe neuropathy measurements in my hands than in my feet, where I have almost no actually symptoms.

I'm not sure whether you would include neurotrblindopic B-Vitamins (and other B vitamins as "alternative" (ie not proven) or not, inasmuch as there are now dozens of theoretical papers, animal studies, small pilot studies and larger broadband clinical studies (many double blind) showing effectiveness of these plus other supplements, either alone or in combination with said neurotropic B-vitamins such as B6 P5P, Biotin, Folate, A-LA, ALC, NAC, Mg etc. I was first diagnosed with "ideopathic peripheral polyneuropathy" in 1999 and then again twice in 2012. I'm now not really sure if it's idiopathic neuropathy or CIPD, inasmuch as it's progressive, was diagnosed with electircal tests and a lumbar puncture but no nerve biopsy. Since August, in addition to the R-LA, ALC, NAC, Mg, GLA, I added Benfotiamine, B6 P5P, Biotin, Folate, B12. The difference was night-and-day. All burning sensations stopped after the 2nd day. After the third day all cramping, shocks, shooting pains stopped almost 100%. The vice-type-sock feeling is for the most part gone or appear very seldom. Actually being able to feel when the feet are cold or warm has returned. Previously, the subjective feelings were unreliable - I'd think I had cold feet, but touching them showed, they were actually warm. Pain sensations are beginning to be freliable also. Previously I'd have pains for which there was no good reason OR have no pain where I should have felt it, like when a blister was forming, but I didn't feel it until hours later when it'd burst and was bleeding. Now, just two weeks ago, I felt a blister slowly forming but ignored it because I was sure it was a neuropathic phantom sensation. Took my shoe/sock off and ... there was a blister, with the top half off, so the subjective feeling was correct. Numbness has been receding from mid thigh to now mid calf. And I can actually actively feel the insides of my sandals and shoes, where the soles are hard, soft or where there are joints. Haven't been able to for 20 years.

What can cause High B12 in serum levels? Is there a way to test for intercellular levels? Melamalonic Acid? Homocysteine levels? Is there a way to test for all B levels as related to the TCA cycle? Also - I noticed you had not mentioned Copper Deficiency, but it can absolutely lead to myelopathy and peripheral neuropathy......

can you tell me something about dr af parlow if you can. i briefly worked with him as a computer programmer

Unfortunately, there’s an antibiotic that causes this, but no one will admit it! There are studies to prove it! If it’s “idiopathic or their telling you it’s diabetes, look at past Perscriptions!

Dear mam im 44yrs old im suffering form HMSN disease form 23 years my both hands and legs tip have lost strength and my son also have lower limbs curve and strengthless madam is there any cureable medicine plz help us and we are not rich also to afford for huge medicinal amount

Thanks this was very informative.

How efficacious is Qutenza for idiopathic peripheral neuropathy?

@Nerve Doctors have great info!

Where are the cell bodies located? In the dorsal root Gangilon?

My neurologist said because they had to do a skin biopsy to find it i barely have it. Anyone know what that means? If i barely have it and a pair of socks against my skin is terribly painful and forget the cold. When i get cold its the worst pain ever, over most of my body. Lucky i barely have it because i can barely handle it... Knocks the wind right out of me and i cant get up off the floor for weeks.