Small Fiber Neuropathy in Fribromyalgia Presentation by Todd Levine MD Corinthian Reference Lab
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- เผยแพร่เมื่อ 4 มิ.ย. 2024
- "Linking Small Fiber neuropathy, Chronic pain and Fibromyalgia Webinar " by Todd Levine M.D.
www.corinthianreferencelab.com
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Here it is 2021 and years of dealing with painful small fiber neuropathy and this presentation educated me more than any specialist treating me! Thank you for all the excellent explanations. This is incredibly helpful as a patient!👍👍👍👍👍👍👍👍👍👍👍👍👍
The first doctor who explained me exactly what i am coping with! Thank you so much!
Awesome video. I was an athlete, and I am 49 and feel 89. I just had my skin biopsy today. Can't wait to get to the bottom of my 4 year battle with devastating pain. 🙏
I have lupus and fibromyalgia plus the ten million symptoms that come with them. I am just learning about small fiber neuropathy after suffering with this illness for 4 years now and after 2 attempts to end my life.
I feel something I've never felt before...hope.
Hey Kristi glad this provides hope. But why? Is it cause this can possibly be cured in the future?
I struggle daily with going on.. this has been my life for the past 17 years.. I have tried so many meds and different treatments to find relief without an answer.. im totally losing hope again 😔
I can't thank you enough for this very informative video. I went undiagnosed for Lyme disease for over 11 years and can't begin to describe the debilitating pain I have experienced the great majority of these years. I was just diagnosed as having small fiber neuropathy, and the information you shared certainly fits. As bad as the pain was, what was almost just as bad if not worse has been doctors misdiagnosing me or simply labeling me as drug seeking or passing the pain off to psychological issues. Much of what you mention (especially related to muscle cramps) describes my experience. Thank you again.
Did you find relief for neuropathy? I have it to and it seems I've tried everything--going on 4 years now.
I was diagnosed with sjogrens when I started experiencing nerve pain, numbness, etc. A neuromuscular neurologist did a small punch biopsy. It was negative. My doctor did try though to treat symptoms, unsuccessfully. I pushed to have the biopsy repeated so that I could try ivig. The neuromuscular neurologist refused to repeat it. I tried getting into Cleveland clinic. They refused to even see me. I tried getting into Johns Hopkins. They refused to see me. Two years later, I finally found a doctor who would repeat the biopsy. It was positive for sfn, and quite severe. I was finally prescribed ivig. I have been on it for 6 months and feeling better.
SAME I got nerve pain from Sjogrens
I have connective tissue disease, fibromyalgia and was just diagnosed with SFN. Everyday is a challenge getting dressed, going to work, smiling, being optimistic. I try. I used to be a very positive happy person. These diseases are ruining me. NEED ANSWERS, NEED HELP, NEED TO FEEL GOOD AGAIN>
Look into IVIG and steroids...also new drug in late stage trials called ARA290
I am suffering for 30 years. Get a bit relief from taking magnesium, vit d and c daily. Also trying to exercise daily, even at a slow pace. Water aerobics help
Excellent presentation! Thank you!
All these videos with $10,000 words telling us what small fiber neuropathy is, but no one tells how to treat it.
he is talking about one option which is IVIG
Thank you for a great class.❤
This has been so helpful. Thank you. Empowering!
Excellent presentation lots of interesting information and help for people out there who might be recently diagnosed with this condition or who night need support in getting the right people to help them.
Excellent. Explains a lot.
I have 5 autoimmune including scleroderma lupus many others also was diagnosed late for small fiber neuropathy. How biopsies at once one on my left wrist the other right ankle. SFN os threw out my entire body and its effecting my brain now. Its super hard. I have a severe case but their are no meds except nerve pain meds bc no ked can regrow nerves back.
There are treatments that can work including IVIg
Absolutely superb video
Thank you. Great information and very informative
@corinthinlab i just had genetic testing. I have SCN10A. Apparently nobody else does, with genetic testing.... yet? so they cannot confirm this is my reason for having dysautonomia/POTS. This research is the closest to answers i have found.
Thank you for this highly informative presentation. I really think more Doctors should be watching this as appears to be a very unrecognised / unknown condition often missed
Why does the pain get so much worse at night? I haven't been able to find a good explanation for this phenomenon, and it seems like understanding this might point the way towards treatment options.
+Aren Smith Sounds like a scam. Have you tried it? What is the nature of the treatment, what is the evidence for its efficacy, and if it is effective, why don't doctors know about it?
Mark Engelberg A
For me the more my hands and feet touch any materials the greater the nerve fibers are adjetated so by the time it is time to go to bed my nerves are screaming at me that I am injuring myself even if I am not!
I would think its worse at night because u r laying down on those nerves. I always picture it like one big tooth ache and the throbbing associated with it. Once u lay down that tooth is throbbing away so same as your body due to nerves being laid upon
I've asked that question many times with no explanation. I have neuropathy in one foot for past 4 years. It would flare up so bad about 6-7pm it was just unreal. I couldn't wear socks & shoes and my foot was bright red/purple color. Thank God the intensity of the pain has lessened over the past 4 years but I'm sick of it and want it to be gone, all gone.
I have a question, why if this is so rare as they claim it is and not many Drs know about it much less the treatments for it, is it that 50% of people who have Fibromyalgia testing positive for it? Every other woman these days has Fibromyalgia and as stated in the video "You believe its a compilation of diseases being categorized into one" Fibromyalgia isnt rare and if half those suffering from this pulling at straws diagnosis of Fibromyalgia actually test positive for SFN than why is it so hard to find a Dr that knows about it much less will test a person for it? Its my understanding from discussion with my own Drs that this is not a disease but infact a biproduct of an underlying disease.
Do we classify anyone with small nerve fiber damage as having Small Fiber Neuropathy? Because that wouldnt and doesnt make any sense, since SFN can and does move up your body and can affect your entire body so to class Fibro patients with Small Nerve damage in one area as have SFN when SFN is actually in a class of its own moving up your body seems sort of unwarranted. I have alot of questions concerning this. Ive been suffering from non stop pain for years and recently got my results back and was positive, even my surgeon told me its really rare but how can that be? With so many Fibro patients testing positive and if so many are why dont more Drs know about it?
Ive read alot on Fibromyalgia in my own search for answers and know that there are alot of Drs that dont even believe in Fibromyalgia for one reason or another and believe the symptoms are infact psychological or as stated a number of other problems balling into a one word catch all diagnosis. Mine Im believing may have been caused by my Lupus and since that is an Auto-Immune disorder, I can believe that SFN could be the biproduct of it. My mother has Fybromyalgia and its kinda frustrating to know that Im told SFN is rare yet knowing Fibromyalgia is a cluster diagnosis of sorts that she had no actual way of testing for Fybromyalgia yet she can go get a biopsy and has a 50% chance of having something classed as "RARE".
That doesnt add up to me. She complains of being too hot or too cold all the time and says its her fibromyalgia and complains of pain from time to time yet Im in pain daily NON STOP I have multiple neurological symptoms I'm falling almost daily I have cramps and pain in my knees and did in my face for several months after a stroke like episode,that makes it extremely painful to walk. That doesn't add up to me. Makes me wonder what the actual gold standard is for Diagnosis of Fybromyalgia patients and how many patients actually participated in these studies to throw a large number of 50% have it knowing that is something few Drs know about much less test for or treat. Im sorry none of that adds up logically. Anyone care to clear things up for me on this?
Perhaps this isn't rare at all but in fact just rarely diagnosed not having had the testing methods available for it like today with the break through 80% accurate Punch Biopsy method. Another thing I don't Understand is why if the test would pick up the areas where pain is concentrated in such a small area to look, why do they specify to test in the thigh calf and foot and not in fact on the actual areas of pain. Example hurts like hell in both knees biopsy my knee not my thigh. I don't understand that since my test result showed it in my foot and not my calf or thigh yet my whole legs are in pain and I have no issues with the foot other than I cant really feel them they have to get really cold in order to feel the cold and then once they are they take forever to warm up.
I always thought that was from having taken Metoprolol ER for several years, since it clearly states decreased circulation in hands and feet as a side effect.
ArmaGuyz I don’t believe it’s rare either. Just think not much thought has been given to it and tests are relatively new.
Thank you for this very very informative video .
very good video, but is it UMN or LMN?
so are the small fibers damaged, inflamed, what's the process? I have it was sarcoidosis
Superb job awesome
Diagnosed with GBS a year ago - IVIG treatments. Large nerve conduction test - almost 100% - never any talk about small nerves. Suffering from neuropathy in both hands and feet. No reflexes below knees and can feel some tingling in face. Feet are numb, swollen, tingling,cold. Neurologist treat me with B12 and did a blood sugar test. I do have muscle atrophy and stiffness through out body. I find your presentation very interesting. Can you offer any advice or direction. Thank you
Joy Barber I AM A NURSE. SFPN HAS BEEN RELATED TO GBS AND SJOGRENS. YOUR SYMPTOMS CAN BE RELATED TO SFPN. GO TO A NEUROLOGIST THAT DOES SKIN BIOPSIES FOR SFPN. THEY MUST TEST BY TAKING SKIN BIOPSIES IN THREE AREAS ON ONE LEG. A LAB THAT PROVIDES A KIT FOR THIS IS NOVADX. YOUR DR CAN ORDER THIS KIT, PERFORM THE BIOPSIES, AND SEND THE KIT BACK TO NOVADX FOR TESTING AND RESULTS REGARDING SFPN. YOU CAN ALSO DO A QSART AUTONOMIC NERVE TEST, THE MAYO IN MN DOES THIS. IT IS USUALLY ABNORMAL IF YOU HAVE SFPN. IVIG OR SODIUM CHANNEL DRUGS HAVE BEEN USED TO TREAT SFPN. I HAVE ALSO HEARD OF PLASMAPHERESIS TREATMENT BEING DONE, AS B-CELLS MAY BE INVOLVED IN AN AUTOIMMUNE RESPONSE. BECAUSE OF THIS SOME CALL THIS AUTOIMMUNE SMALL NERVE PERIPHERAL NEUROPATHY. I HAVE ALSO READ STUDIES THAT TRIED ALPHA LIPOIC ACID, AN OVER THE COUNTER SUPPLEMENT, THAT HELPS ... OVER TIME... MONTHS... TO REBUILD THE ACTUAL NERVE FIBERS, THEREFORE DECREASING THE PAIN AND BURNING. DO A TH-cam SEARCH FOR DR. OAKLANDER AND HARVARD OR MASSACHUSETTS GENERAL HOSPITAL. SHE HAS SEVERAL VERY INFORMATIVE LECTURES ON SFPN AND IS A WORLDWIDE EXPERT AND IS DOING CURRENT RESEARCH ON THE CONDITION. GOOD LUCK!! THERE IS HOPE!!
@@ichikireiLV .
Interesting. Could decades of phenytoin use lead to SFN?
if i have symptoms in my feet with vibrating and my fingers started vibrating a bit too and arm went a bit numb is it okay that i got the skin biopsy in my hand?
also, what are the chances these swollen nerves have sarcoidosis cells working them over? thank you
Exactly cuz I feel like mine is getting worse.....
Excellent
I experienced the onset of neuropathy in my right foot 4 months ago with all the classic sensations. I am not diabetic nor do I drink. NCS/EMG was normal. Drs have not shown to be very interested in finding the root cause. I suspect its the statin that I have been taking for almost 2 years. But the drs don't think statins can cause neuropathy, contrary to what I have seen online. I discontinued the statin almost 4 weeks ago on my own. Seems to be getting better, but I am also taking gabapentin. Only time will tell. Any opinions about statin induced neuropathy?
any update?
ive had symptroms for 6 yrs from b6 and my results from my skin biopsy this past july are negative idk wat to doo
Can one have SFN that presents as just bilateral muscle pain in arms and legs?
That’s what I have
I have CIDP but was yold a few years back I also have SFN. But my Dr doesn't believe in the accuracy of the test and since my motor nervewhich are not perfect is not worse she says I am fine. But I complain of sensory problems all the time. It affectd my ears and other female parts with lots of Swelling. I know IVIG helps me but my Dr doesn't see the Sensory nerve damage. Help How do I convince her that what happened to me 11 years ago is happening again with the sensory feeling affecting more then the motor nerves. I HATE FEELING THIS WAY 😭
How often do you have IVIg and how much does it help you?
why do you think small fiber neuropathy would relate to the symptoms of chronic fatigue syndrome?
SJOGRENS CAUSED MY SMALL FIBER NEUROPATHY
I've been studying reducing neuropathy quickly and discovered a great resource at Nats Neuro Site (look it up on google)
It's a scam. This treatment does not work!!
@@Sconzette Any post that says (look it up on google) is a scam