I was just diagnosed with small fiber neuropathy after suffering cluelessly for about five years. Dr. Oaklander is amazing! I am so glad that I found her TH-cam presentations. I'm so lucky to be living in the Boston area to be able to go to MGH and get the appropriate treatment.
I'm so sorry. See if you can get referred to a neuromuscular specialist. They are more informed about SFN. And btw, any doctor can now do the skin biopsy to test for it. It doesn't have to be a specialist! One other tip: there is a SFN group over on FB that, in combo with these lectures from Dr O, have taught me everything I know about my disease. Highly recommend you seek us out! Gentle hugs...
Me too. I even had EMGs and skin tests twice but they never find anything "wrong". I always wondered if the ppl just didn't know this info (not taught in medical school) or they don't bring up any other medical possibilities because there is no way of doing the testing in our area in Wisconsin.
I am 100 percent positive my mother who was born in 1923 had this.. I also have it and my daughter was diagnosed at 15 with it. I am now 62 and my daughter is now 32. I am greatful for your research . All the symptoms you listed, we have its like we made the check list. You nailed it.
Awesome explanation of the undiagnosed condition I have had since I was 38 in 1990. I could never find a doc to diagnose or treat me. The pain in my feet was horrendous and leveled off for the past 25 yrs. Still, the only thing that takes my burning pain away is Biofreeze or cold water. I am hoping to try immunoglobulin infusions to attempt to heal my small fiber nerves.
Excellent video content! Forgive me for the intrusion, I would appreciate your thoughts. Have you heard about - Taparton Sturdy Nerves Takeover (do a search on google)? It is a great exclusive product for Getting rid of Neuropathy minus the headache. Ive heard some great things about it and my BF at last got excellent results with it.
THANK YOU DR.OAKLANDER!! THIS IS SUCH IMPORTANT RESEARCH!! IF YOU READ THIS, OR IF THE HOSPITAL DOES, PLEASE MESSAGE ME. I WANT TO PARTICIPATE IN YOUR STUDY. I WILL RECEIVE THREE SNF BIOPSIES TODAY. I HAVE A LENGTHY EXPOSURE TO TOXINS, LAB TESTED, AND CHRONIC LYME DISEASE. I HAVE HAD AUTONOMIC NERVE TESTING AS WELL.
Are you sure you don't have venous insufficiency? Can I ask how you got the diagnosis and what tests you had? I also have pain and tingling in my legs, they feel heavy and like restless leg syndrome. I was diagnosed with deep and superficial venous insufficiency.
im dealing with SFN and it seems like my doctors don't know much about it. i go online and can't find much about it. is there a full list of symptoms out there?
Don’t smoke weed, it actually makes it worse (for me). Makes the pain more noticeable. Warm water helps. Oils and eating healthy. Flexibility, yoga and resistance training. Anything that helps with circulation and blood flow. I’d try to reframe from taking medication. Although I have been doing my research and steroids for a short period of time. Can make it go away. This is something that for no reasons can go away ... or get worse. Most of the time with small fiber neuropathy there is an underlined disease. Fix the underlining problem. Then small fiber neuropathy can go away :)
Is anyone finding ways to relieve the pain in your feet ? Just seems like there are little to no advancements in treatments. I've tried the meds, supplements etc and just not getting relief.
Bo Hawkins MR. HAWKINS, I SUFFER FROM SFPN. PREDNISONE RX AND COMPRESSION SOCKS WORK THE BEST FOR ME, AND PAIN MEDICATION IF YOU NEED IT. SAVELLA RX AND/OR DICLOFENAC SODIUM 1% TOPICAL GEL AND/OR TOPICAL LIDOCAINE 5% PATCHES CAN HELP WITH THE FOOT BURNING, OR ANY MUSCLE, TENDON, LIGAMENT, OR BONE BURNING ANYWHERE, AND PAIN. NEITHER NEURONTIN, NOR LYRICA, DID A THING FOR ME. ASK YOUR DOCTOR ABOUT THESE. GOOD LUCK!
Your message is several years old now, but thought I'd add my experience for others reading this. The things that have made the biggest difference for me are Lyrica and a relatively new drug called Belbuca. It's an opiate but in a form that you cannot get addicted to. I was in such bad pain prior to starting it that I would scream. Couldn't help it. Pain was always at least a 6, and would flare to a 10 multiple times a week. Belbuca and Lyrica have literally been life-savers. Thank God for good pain doctors!!
Yes! I only know this because it has been discussed in my SFN group on Facebook. I highly recommend joining!! The combined knowledge of everyone is amazing!
I’m terribly frustrated as I was diagnosed with SFPN and Pots, plus sero negative Sjögren’s syndrome but none of the many doctors I have seen has offered treatment here in MN. At Mayo Clinic, I was told they would only offer treatment if they could find the cause. After many painful tests, the only thing I was offered was to do their pain management boot camp. I have given up and decided that as excruciating my pain is, I just have to live with it. At least as of 2018, I could not find any neurologist who is familiar with Dr. Oaklander’s work.
I would love to bring my 17 year old daughter to see you. She has chronic headache 24/7, intestinal issues and more. How do I go about making an appointment with you? This gives me hope for her! Thank you.
I was labelled by the first doctor I went to as a drug seeker; what a present nightmare! My office neurologist is certain it is SFN, my niece has this, and I am in severe and intractable pain. Can't touch my computer anymore, my finger tips are on fire and only relieved by warm water immersion. Pain triggered by cold. My soles are burning, tolerable. Hard to walk, balance is severly altered, and have almost faced a bowel resection from a sudden case of diverticulitis at my daughter's wedding. I know stress did that! Now, not believed at pain doctor, and dismissed with sympathetic attitude last friday. Can I come there to MGH? Why do we have to prove we're in pain? My fingerpads blow up; they've seen it in real time and in photographs. Advise to go to a hand surgeon for Carpal tunnel in one side that does not bother me. Gabapentin helped for 14 months, now moving to Lyrica... OMG I'm very worried; especially about the dismissive attitude; this is just getting worse the pain characteristic is now deep bone pain like my hands and feet are going to fall off. Does neuropathy swell your finger and toe prints???
Margaret Kimball FYI.. SNF ALSO CAUSES ENTERIC - DIGESTIVE - PROBLEMS BECAUSE DIGESTION IS PART OF AUTONOMIC FUNCTION THAT THESE SMALL FIBER NERVES CONTROL. I DON’T KNOW IF ANYONE HAS PROGRESSED TO BIOPSY LAYER OF ENTERIC TISSUE TO DIAGNOSE THIS 100%. THIS WOULD BE A ?? FOR DR. OAKLANDER GIVING THE LECTURE IN VIDEO. DO NOT EVER LET A DR OR ANYONE TELL YOU THAT MAJOR HEALTH DIAGNOSES ARE LINKED TO STRESS. IT IS A LAZY, AS IN, I DO NOT CARE ENOUGH TO FIND OUT WHY, EXCUSE. I AM SORRY YOU SUFFER FROM THIS! I HAVE FOR FOURTEEN YEARS, 24 HOURS A DAY, EVERY DAY OF MY LIFE. YES!!!!! I MYSELF, A COLLEGE-EDUCATED DEGREE OBTAINED, MEDICAL PROFESSIONAL, HAVE ALSO BEEN CALLED AN ADDICT, DRUG SEEKER, DOCTOR SHOPPER... WHATEVER THEY CAN THINK OF IN THEIR PEA BRAIN VOCABULARY OF INSULTS. THESE DOCTORS ARE TOO LAZY TO EVEN CARE OF THE CAUSE OF YOUR PAIN! THEY DO NOT PROTECT YOU FROM HARM AS THEY SWORE WHEN THEY TOOK THEIR OATH AT LICENSURE. IT IS ABSOLUTELY THE BIGGEST FAILURE IN MEDICINE, THE INABILITY, BECAUSE NOW IT HAS BECOME POLITICAL, TO CONTROL AND UNDERSTAND, AND TREAT.... EXTREME CHRONIC PAIN. AND IN 14 YEARS, I HAVE AN IMPECCABLE RX HISTORY, NO VIOLATIONS, 100% COOPERATION, EVEN WHEN IT PUT ME IN THE HOSPITAL, I DID.... EVERYTHING... THE DR SUGGESTED... AND FOLLOWED HIS PLAN EXACTLY.... AND STILL... WE... ARE ALL... CALLED THESE HORRID NAMES. IT IS UNACCEPTABLE!!
I have peripheral neuropathy in my feet for 15 years. At first my doc thought it was all in my head until I told him I wanted my feet cut off because I couldn't take the pain any longer. I have been on morphine for so long but nothing else helped the pain. I really don't want to be on these painkillers anymore and I am back to wanting my feet amputated to get off the pills. This disease is so depressing.
Have you tried Lyrica, or Cymbalta or even Neurontin? They must be given at therapeutic doses to even work though. Otherwise, unfortunately, as much as you don’t want to resort to opiates it is much needed for your pain relief. I am sorry you are going through this and good luck.
I just got some labs back. I’m very TS-HDS result 21,000. My Neuro told me this is of no clinical significance. I am so sick, and really need to find help. Is this really insignificant? ( Positive skin biopsy SFN )
for veterans, you said vaccines, pollution from the burning wells, but another thing, and many people in the world also got GULF WAR syndrome ... they had a lot of soda, with ASPARTAME ... and heated in the sun for hours & days which makes it even more toxic .... !!! also for people that were never around the gulf, but as we know, toxic clouds of chemicals can travel oceans
My grandad got given experimental drugs in the 2nd world war. Three of my aunties spent their entire lives in institutions. I've had so many utterly bizarre illnesses - spastic colon, fibromyalgia - now I have a bi-lateral brachial plexus injury. The drugs just don't work.
EDS Society has a worldwide registry of EDS (Ehlers Danlos Syndrome)/HSD (Hypermobile Spectrum Disorder) ppl and therefore would be a great database for ppl who want to do research on SFN.
How can I find a doctor to work with here n VT? Any at Dartmouth-Hitchcock Med. Center in Lebanon, NH?]You give me hope after7 years of mind-umbing pain. Hope I can find one. Would love to work with you Dr Oaklander
I know you posted this comment three years ago, but if you’re still looking for excellence in a neurologist at DHMC, I highly recommend Dr. Victoria Lawson. She has helped us tremendously, in continuing our search for answers re my daughter’s polyneuropathy.
I was just diagnosed with small fiber neuropathy after suffering cluelessly for about five years. Dr. Oaklander is amazing! I am so glad that I found her TH-cam presentations. I'm so lucky to be living in the Boston area to be able to go to MGH and get the appropriate treatment.
For decades I've informed my doctors that I suffer from ALL of these symptoms. Never have they bothered to help!
I'm so sorry. See if you can get referred to a neuromuscular specialist. They are more informed about SFN. And btw, any doctor can now do the skin biopsy to test for it. It doesn't have to be a specialist! One other tip: there is a SFN group over on FB that, in combo with these lectures from Dr O, have taught me everything I know about my disease. Highly recommend you seek us out! Gentle hugs...
Me too. I even had EMGs and skin tests twice but they never find anything "wrong". I always wondered if the ppl just didn't know this info (not taught in medical school) or they don't bring up any other medical possibilities because there is no way of doing the testing in our area in Wisconsin.
An excellent and very valuable lecture on Small-fiber Polyneuropathy! Thank you Dr. Oaklander!
I am 100 percent positive my mother who was born in 1923 had this.. I also have it and my daughter was diagnosed at 15 with it. I am now 62 and my daughter is now 32. I am greatful for your research . All the symptoms you listed, we have its like we made the check list. You nailed it.
Is your sfn caused by a sodium channel mutation ?
Excellent info for EDS patients, thank you Dr. Oaklander!
Awesome explanation of the undiagnosed condition I have had since I was 38 in 1990. I could never find a doc to diagnose or treat me. The pain in my feet was horrendous and leveled off for the past 25 yrs. Still, the only thing that takes my burning pain away is Biofreeze or cold water. I am hoping to try immunoglobulin infusions to attempt to heal my small fiber nerves.
Have you had any luck finding relief for your SFN ?
Excellent video content! Forgive me for the intrusion, I would appreciate your thoughts. Have you heard about - Taparton Sturdy Nerves Takeover (do a search on google)? It is a great exclusive product for Getting rid of Neuropathy minus the headache. Ive heard some great things about it and my BF at last got excellent results with it.
Thank You!!!
Ppl who had covid should watch this
I will be talking to my doctor about this as It seems to explain my symptoms! Thank you very much..
THANK YOU DR.OAKLANDER!! THIS IS SUCH IMPORTANT RESEARCH!! IF YOU READ THIS, OR IF THE HOSPITAL DOES, PLEASE MESSAGE ME. I WANT TO PARTICIPATE IN YOUR STUDY. I WILL RECEIVE THREE SNF BIOPSIES TODAY. I HAVE A LENGTHY EXPOSURE TO TOXINS, LAB TESTED, AND CHRONIC LYME DISEASE. I HAVE HAD AUTONOMIC NERVE TESTING AS WELL.
My doc says I have this. I have bad muscle pain mostly in my legs and arms. Like I over exercised. The muscles are very sore and my legs get restless.
Are you sure you don't have venous insufficiency? Can I ask how you got the diagnosis and what tests you had? I also have pain and tingling in my legs, they feel heavy and like restless leg syndrome. I was diagnosed with deep and superficial venous insufficiency.
@@rumblefish9 How do they correct this?
Is this research still being conducted?
im dealing with SFN and it seems like my doctors don't know much about it. i go online and can't find much about it. is there a full list of symptoms out there?
i just feel like im living in hell.
Sean Holbrook i have SFN as well. Doctors don’t know much about it. It’s very new.
Don’t smoke weed, it actually makes it worse (for me). Makes the pain more noticeable. Warm water helps. Oils and eating healthy. Flexibility, yoga and resistance training. Anything that helps with circulation and blood flow. I’d try to reframe from taking medication. Although I have been doing my research and steroids for a short period of time. Can make it go away. This is something that for no reasons can go away ... or get worse. Most of the time with small fiber neuropathy there is an underlined disease. Fix the underlining problem. Then small fiber neuropathy can go away :)
@@zeddorafox8760 . Blood flow circulation and diet is key
@@zeddorafox8760 any update? I suffer for small fiber neuropathy for years. Do u take any medication?
Is anyone finding ways to relieve the pain in your feet ? Just seems like there are little to no advancements in treatments. I've tried the meds, supplements etc and just not getting relief.
Deep tissue massage
Bo Hawkins MR. HAWKINS, I SUFFER FROM SFPN. PREDNISONE RX AND COMPRESSION SOCKS WORK THE BEST FOR ME, AND PAIN MEDICATION IF YOU NEED IT. SAVELLA RX AND/OR DICLOFENAC SODIUM 1% TOPICAL GEL AND/OR TOPICAL LIDOCAINE 5% PATCHES CAN HELP WITH THE FOOT BURNING, OR ANY MUSCLE, TENDON, LIGAMENT, OR BONE BURNING ANYWHERE, AND PAIN. NEITHER NEURONTIN, NOR LYRICA, DID A THING FOR ME. ASK YOUR DOCTOR ABOUT THESE. GOOD LUCK!
Your message is several years old now, but thought I'd add my experience for others reading this. The things that have made the biggest difference for me are Lyrica and a relatively new drug called Belbuca. It's an opiate but in a form that you cannot get addicted to. I was in such bad pain prior to starting it that I would scream. Couldn't help it. Pain was always at least a 6, and would flare to a 10 multiple times a week. Belbuca and Lyrica have literally been life-savers. Thank God for good pain doctors!!
Any connection to Tinnitus and or Mast Cell Activation?
Yes! I only know this because it has been discussed in my SFN group on Facebook. I highly recommend joining!! The combined knowledge of everyone is amazing!
I’m terribly frustrated as I was diagnosed with SFPN and Pots, plus sero negative Sjögren’s syndrome but none of the many doctors I have seen has offered treatment here in MN. At Mayo Clinic, I was told they would only offer treatment if they could find the cause. After many painful tests, the only thing I was offered was to do their pain management boot camp. I have given up and decided that as excruciating my pain is, I just have to live with it. At least as of 2018, I could not find any neurologist who is familiar with Dr. Oaklander’s work.
How was your sero negative Sjogren's syndrome diagnosed? Did you get the lip biopsy done? and did you have dry mouth before getting diagnosed?
When was this done and if years ago (This date for me is 5-22), what is the outcome now?
I would love to bring my 17 year old daughter to see you. She has chronic headache 24/7, intestinal issues and more. How do I go about making an appointment with you? This gives me hope for her! Thank you.
?how can i do a Biopsy lots of nerve pain legs and feet
I was labelled by the first doctor I went to as a drug seeker; what a present nightmare! My office neurologist is certain it is SFN, my niece has this, and I am in severe and intractable pain. Can't touch my computer anymore, my finger tips are on fire and only relieved by warm water immersion. Pain triggered by cold. My soles are burning, tolerable. Hard to walk, balance is severly altered, and have almost faced a bowel resection from a sudden case of diverticulitis at my daughter's wedding. I know stress did that! Now, not believed at pain doctor, and dismissed with sympathetic attitude last friday. Can I come there to MGH? Why do we have to prove we're in pain? My fingerpads blow up; they've seen it in real time and in photographs. Advise to go to a hand surgeon for Carpal tunnel in one side that does not bother me. Gabapentin helped for 14 months, now moving to Lyrica... OMG I'm very worried; especially about the dismissive attitude; this is just getting worse the pain characteristic is now deep bone pain like my hands and feet are going to fall off. Does neuropathy swell your finger and toe prints???
Margaret Kimball FYI.. SNF ALSO CAUSES ENTERIC - DIGESTIVE - PROBLEMS BECAUSE DIGESTION IS PART OF AUTONOMIC FUNCTION THAT THESE SMALL FIBER NERVES CONTROL. I DON’T KNOW IF ANYONE HAS PROGRESSED TO BIOPSY LAYER OF ENTERIC TISSUE TO DIAGNOSE THIS 100%. THIS WOULD BE A ?? FOR DR. OAKLANDER GIVING THE LECTURE IN VIDEO. DO NOT EVER LET A DR OR ANYONE TELL YOU THAT MAJOR HEALTH DIAGNOSES ARE LINKED TO STRESS. IT IS A LAZY, AS IN, I DO NOT CARE ENOUGH TO FIND OUT WHY, EXCUSE. I AM SORRY YOU SUFFER FROM THIS! I HAVE FOR FOURTEEN YEARS, 24 HOURS A DAY, EVERY DAY OF MY LIFE. YES!!!!! I MYSELF, A COLLEGE-EDUCATED DEGREE OBTAINED, MEDICAL PROFESSIONAL, HAVE ALSO BEEN CALLED AN ADDICT, DRUG SEEKER, DOCTOR SHOPPER... WHATEVER THEY CAN THINK OF IN THEIR PEA BRAIN VOCABULARY OF INSULTS. THESE DOCTORS ARE TOO LAZY TO EVEN CARE OF THE CAUSE OF YOUR PAIN! THEY DO NOT PROTECT YOU FROM HARM AS THEY SWORE WHEN THEY TOOK THEIR OATH AT LICENSURE. IT IS ABSOLUTELY THE BIGGEST FAILURE IN MEDICINE, THE INABILITY, BECAUSE NOW IT HAS BECOME POLITICAL, TO CONTROL AND UNDERSTAND, AND TREAT.... EXTREME CHRONIC PAIN. AND IN 14 YEARS, I HAVE AN IMPECCABLE RX HISTORY, NO VIOLATIONS, 100% COOPERATION, EVEN WHEN IT PUT ME IN THE HOSPITAL, I DID.... EVERYTHING... THE DR SUGGESTED... AND FOLLOWED HIS PLAN EXACTLY.... AND STILL... WE... ARE ALL... CALLED THESE HORRID NAMES. IT IS UNACCEPTABLE!!
We're going to have to turn up the volume...
I have peripheral neuropathy in my feet for 15 years. At first my doc thought it was all in my head until I told him I wanted my feet cut off because I couldn't take the pain any longer. I have been on morphine for so long but nothing else helped the pain. I really don't want to be on these painkillers anymore and I am back to wanting my feet amputated to get off the pills. This disease is so depressing.
Have you tried Lyrica, or Cymbalta or even Neurontin? They must be given at therapeutic doses to even work though. Otherwise, unfortunately, as much as you don’t want to resort to opiates it is much needed for your pain relief. I am sorry you are going through this and good luck.
I know how you feel
I just got some labs back. I’m very TS-HDS result 21,000. My Neuro told me this is of no clinical significance. I am so sick, and really need to find help. Is this really insignificant? ( Positive skin biopsy SFN )
for veterans, you said vaccines, pollution from the burning wells, but another thing, and many people in the world also got GULF WAR syndrome ... they had a lot of soda, with ASPARTAME ... and heated in the sun for hours & days which makes it even more toxic .... !!! also for people that were never around the gulf, but as we know, toxic clouds of chemicals can travel oceans
My grandad got given experimental drugs in the 2nd world war. Three of my aunties spent their entire lives in institutions.
I've had so many utterly bizarre illnesses - spastic colon, fibromyalgia - now I have a bi-lateral brachial plexus injury.
The drugs just don't work.
Check out the research of Dr Beatrice Golomb.
EDS Society has a worldwide registry of EDS (Ehlers Danlos Syndrome)/HSD (Hypermobile Spectrum Disorder) ppl and therefore would be a great database for ppl who want to do research on SFN.
Please help me. I'm so tired! I'd be willing t be in a study!
Any connection to Mercury (or other Heavy Metal) Toxicity?
I have this is horrible illness; I got due to autoimmune illnesses.
Which autoimmune illeness
How can I find a doctor to work with here n VT? Any at Dartmouth-Hitchcock Med. Center in Lebanon, NH?]You give me hope after7 years of mind-umbing pain. Hope I can find one. Would love to work with you Dr Oaklander
I know you posted this comment three years ago, but if you’re still looking for excellence in a neurologist at DHMC, I highly recommend Dr. Victoria Lawson. She has helped us tremendously, in continuing our search for answers re my daughter’s polyneuropathy.
I cant hear this which is a shame
Be honest... This video SUCKS !
Terrible sound quality...
Terrible lighting...
AND YET IT WAS A GREAT,
AND FANTASTIC PRESENTATION !
wow... invest in a good mic please...my ears are bleeding from the sharp noises (tinnitus - hyperaccusis)