She had me at Erythromelalgia and all the symptoms as a child. She described me 100% growing up, but I was treated like it was all in my head, as one of the last men speaking said. My first doctor, at 6 months old told my mother I was the "laziest child he'd ever seen" and that label followed me until I landed in ICU intubated at 50 years old. Doctors who treat people like they are crazy, need to lose their licenses. What ever happened to "Do no harm"? What I found disappointing about this seminar was that there was no mention of the most common autoimmune disease in the US as well as the UK, Celiac Disease. Also, many people who have breathing difficulties are not tested for Alpha 1 Deficiency. Medicine has such a long way to go. The first thing doctors need to be taught is compassion and to believe their patients. Thank you, Dr. Oaklander.
I understand this. You spend 90% of the time feeling like you have to validate and prove your symptoms. This is taxing to the mind.. When you have something rare, you have the burden of proof 100% of the time
Non length dependent small fiber neuropathy has pretty well destroyed me over the last ten years. These folks sound so intelligent but they are really just learning and very slowly. I’ll be happy to die.
Thank you and all the research I have small fiber started on my one toe . 3 years ago ,till then never even heard of this before! It has spread to my hands ,It looks like mine is from alcohol. I did quite drinking. But the damage was already done to my nerves. Keep up the great resurtch
How interesting is this... I have sudden SFN, and what they are finding is that I have antibodies against my FGFR3 and TSG-DS this is a common new finding in SFN. It is rarely looked for by doctors. Thank goodness for my neurologist. My story is long but I want to get this antibody out there for people to research and ask for the testing.
@@islas357 If you can get approved for IVIG therapy that can often help or plasma exchange therapy. And of course there are drugs like Lyrica and Gabapentin and Cymbalta.
how is it diagnosed besides a skin biopsy i had that but mine was negative i think i have autonomic issues with gut throat how do i get tested for those
I have SFN and i struggle swallowing food. I choke randomly. Its like my nerves stop telling my body to swallow and it gets stuck... ive lost a masdive amount of weight. I was 270 at one point im at 127 currently and struggling to keep even that little weight. I think my swallowing issue is multi-faceted muscular disfunction...mainly. but i think my mind shuts down and refuses to even try to swallow because food causes pain... so my body says nope... i dont digest well, i dont absorb nutrition well, and eliminating food after ive eaten is a slow painful process that has caused my to passout....
its the autonomic issues i cant stand the tingling is not rly that bad i had a negative skin biopsy but i need autonomic testing i dont think skin biopsies pick that up though
I have a 16 year old son. When he was younger he would get pail very fast. As he aged he would have numbness and tingling dizziness vision blackouts outs glasses and birth hearing loss also high paintolerance. GJB2 related to hearing loss. He seen doctors after doctors not sure if its neuropathy or pots or both.
Hi dr. Oaklander my name is Patricia bertolo I believe him dealing with small-fiber polyneuropathy I was diagnosed with fibromyalgia I also have retroperitoneal fibrosis you also was diagnosed with I also have the parcc test taken about a year-and-a-half ago
Yes, and at lower doses than people usually think. You only need 1.3mg per day - easy to get from food. Supplements gave me B6 toxicity - still dealing with the damage two years later. 😢
Dr Oaklander I appreciate all your efforts and research in SFN! I have watched all of your TH-cam videos. I was wondering if there is a way to contact you because my 24 year old son has length dependent SFN per his skin biopsy but his symptoms presents like both length dependent and non length dependent. He has an ANA of 1:80 and all of his blood work, MRI's, EMG, NCS, etc are normal. This has been going on for a year, doctors are confused, and he has not received any treatment. Please advise
Tammy, I don't think you can get a response from Dr. Oaklander here. However, I suggest you consider an appointment with a Dr. familiar with this condition such as Dr. Oaklander or another. You may also consider ordering a test for antibodies to gangliosides such as Ganglioside Antibody Panel 6 from Quest diagnostics. Dr. Oaklander mentioned ganglioside testing too. Though you said he was positive for anti neuronal already. I was negative on that. If he tests positive for gangliosides and gets a CIDP diagnosis then IVIG is an FDA approved treatment. I have not talked to my neurologist about Dr. Oaklander, but my neurologist specializes in neuro-immune conditions, but it took decades to find him. He gave me that ganglioside panel and I tested positive for asialo-GM1 and he diagnosed me with small fiber polyneuropathy and a small fiber variant of CIDP. My skin biopsy was negative, but I got it at Johns Hopkins, not Mass General and my dr. said negative means nothing. The recommended treatment for me is IVIG, which I'm preparing for now. I may ask my doctor about Dr. Oaklander and this information too before starting.
Thanks for your input! He does have an appointment with the neuromuscular specialist at Johns Hopkins in June and I know this doctor and Dr Oaklander have been cited in publications together so hopefully they are on the same page or at least I have more informed questions to ask. I hope things work out for you!
I had SFN but is controlled by Dulexitine and pregabalin.For the last four years.Iam 70 now.All blood tests ncv normal. There is no break through in this disease.Fed up with these lectures.
😡Every symptom she mentioned here is exactly what it was like for me when a child, only I was treated as a lazy child. Everyone...teachers, doctors and parents just rolled their eyes at me. I had no one to give a sh**. Now I am older and finally have 10 diagnoses, And because I hurt so much, I can't breathe well and need a wheelchair to get around, all I want is to die. At least she is trying to help people look deeper, unlike most doctors and naysayers, I appreciate her.
She had me at Erythromelalgia and all the symptoms as a child. She described me 100% growing up, but I was treated like it was all in my head, as one of the last men speaking said. My first doctor, at 6 months old told my mother I was the "laziest child he'd ever seen" and that label followed me until I landed in ICU intubated at 50 years old. Doctors who treat people like they are crazy, need to lose their licenses. What ever happened to "Do no harm"?
What I found disappointing about this seminar was that there was no mention of the most common autoimmune disease in the US as well as the UK, Celiac Disease. Also, many people who have breathing difficulties are not tested for Alpha 1 Deficiency.
Medicine has such a long way to go. The first thing doctors need to be taught is compassion and to believe their patients.
Thank you, Dr. Oaklander.
Ive been treated like a mental patient...even after having a diagnosis of SFN.... the medical community caused C-ptsd
I understand this. You spend 90% of the time feeling like you have to validate and prove your symptoms. This is taxing to the mind..
When you have something rare, you have the burden of proof 100% of the time
Most mental patients are not mental patients, they have SFN.
@@magnusthoren3852I have fybromyalgia.aspeegers CFS add heds how do.we no if have sfnif don't have pain in touch
Non length dependent small fiber neuropathy has pretty well destroyed me over the last ten years. These folks sound so intelligent but they are really just learning and very slowly. I’ll be happy to die.
I have you tried IVIG?
@@marcusaurelius2242 I am on month 8 for IVIG for my SFN and no change yet, however a lot of people do get relief is they can get approved.
@@Mark-ib5bq How are you now?
Thank you and all the research I have small fiber started on my one toe . 3 years ago ,till then never even heard of this before! It has spread to my hands ,It looks like mine is from alcohol. I did quite drinking. But the damage was already done to my nerves. Keep up the great resurtch
I'm so so tired knost with autonomic nerve dysfunction and recently fibromyalgia I believe I am dealing with SF small fiber neuropathy
How interesting is this... I have sudden SFN, and what they are finding is that I have antibodies against my FGFR3 and TSG-DS this is a common new finding in SFN. It is rarely looked for by doctors. Thank goodness for my neurologist. My story is long but I want to get this antibody out there for people to research and ask for the testing.
Is there anything that can be done about it?
@@islas357 If you can get approved for IVIG therapy that can often help or plasma exchange therapy. And of course there are drugs like Lyrica and Gabapentin and Cymbalta.
Savannah, I have TS-HDS also, what is your treatment and outcomes? I am at month 8 of IVIG treatment and no change, plus on Lyrica.
Savannah, I am on the 8th month of IVIG therapy and no relief yet unfortunately.
@@Mark-ib5bqwhat are you symptoms
how is it diagnosed besides a skin biopsy i had that but mine was negative i think i have autonomic issues with gut throat how do i get tested for those
I have SFN and i struggle swallowing food. I choke randomly. Its like my nerves stop telling my body to swallow and it gets stuck... ive lost a masdive amount of weight. I was 270 at one point im at 127 currently and struggling to keep even that little weight. I think my swallowing issue is multi-faceted muscular disfunction...mainly. but i think my mind shuts down and refuses to even try to swallow because food causes pain... so my body says nope... i dont digest well, i dont absorb nutrition well, and eliminating food after ive eaten is a slow painful process that has caused my to passout....
Take a good laxative to help u poop.
Vitamin B6 gave me SFN. It’s a nightmare.
Same, it’s the worst.
were u diagnosed skin biopsy
Same. It's truly awful (and ongoing after 1 year unfortunately)
@@sarahallibone yep same i just took b1 and b2 and getting heart palapatatios chest pain i wonder if b1 and b2 raise b6 to toxic level
its the autonomic issues i cant stand the tingling is not rly that bad i had a negative skin biopsy but i need autonomic testing i dont think skin biopsies pick that up though
With small fiber neuropathy I've had it for years why is it super painful even most more so during the day at night where you can't sleep😢
I have a 16 year old son. When he was younger he would get pail very fast. As he aged he would have numbness and tingling dizziness vision blackouts outs glasses and birth hearing loss also high paintolerance. GJB2 related to hearing loss. He seen doctors after doctors not sure if its neuropathy or pots or both.
Hi dr. Oaklander my name is Patricia bertolo I believe him dealing with small-fiber polyneuropathy I was diagnosed with fibromyalgia I also have retroperitoneal fibrosis you also was diagnosed with I also have the parcc test taken about a year-and-a-half ago
If you think she will answer you, you are insane. Read her reviews as a physician.
sfn cause twitchs/fasciculation? thats my question.
Sodium seems common is current able mineral...isn't it... Morgellons varieties comes to mind ...
Can vitamin B6 toxicity cause this ?
Yes.
Yes
Yes!!
Yes!! Don’t take too much
Yes, and at lower doses than people usually think. You only need 1.3mg per day - easy to get from food. Supplements gave me B6 toxicity - still dealing with the damage two years later. 😢
Clorophyll oxigenates the system many blessings!
Dr Oaklander I appreciate all your efforts and research in SFN! I have watched all of your TH-cam videos. I was wondering if there is a way to contact you because my 24 year old son has length dependent SFN per his skin biopsy but his symptoms presents like both length dependent and non length dependent. He has an ANA of 1:80 and all of his blood work, MRI's, EMG, NCS, etc are normal. This has been going on for a year, doctors are confused, and he has not received any treatment. Please advise
Tammy, I don't think you can get a response from Dr. Oaklander here. However, I suggest you consider an appointment with a Dr. familiar with this condition such as Dr. Oaklander or another. You may also consider ordering a test for antibodies to gangliosides such as Ganglioside Antibody Panel 6 from Quest diagnostics. Dr. Oaklander mentioned ganglioside testing too. Though you said he was positive for anti neuronal already. I was negative on that. If he tests positive for gangliosides and gets a CIDP diagnosis then IVIG is an FDA approved treatment.
I have not talked to my neurologist about Dr. Oaklander, but my neurologist specializes in neuro-immune conditions, but it took decades to find him. He gave me that ganglioside panel and I tested positive for asialo-GM1 and he diagnosed me with small fiber polyneuropathy and a small fiber variant of CIDP. My skin biopsy was negative, but I got it at Johns Hopkins, not Mass General and my dr. said negative means nothing. The recommended treatment for me is IVIG, which I'm preparing for now. I may ask my doctor about Dr. Oaklander and this information too before starting.
Thanks for your input! He does have an appointment with the neuromuscular specialist at Johns Hopkins in June and I know this doctor and Dr Oaklander have been cited in publications together so hopefully they are on the same page or at least I have more informed questions to ask. I hope things work out for you!
@@tammynorwitz6711 How did his appointment go? What doctor at Johns Hopkins did he see? Thank you so much!
I had SFN but is controlled by Dulexitine and pregabalin.For the last four years.Iam 70 now.All blood tests ncv normal.
There is no break through in this disease.Fed up with these lectures.
For heavens sakes get genetic testing
Bad idea
@@apacur why?
READ HER REVIEWS. NOT GOOD. She is a clinician.
😡Every symptom she mentioned here is exactly what it was like for me when a child, only I was treated as a lazy child. Everyone...teachers, doctors and parents just rolled their eyes at me. I had no one to give a sh**. Now I am older and finally have 10 diagnoses, And because I hurt so much, I can't breathe well and need a wheelchair to get around, all I want is to die.
At least she is trying to help people look deeper, unlike most doctors and naysayers, I appreciate her.
@@cbryce9243 I am sorry for your suffering. I am near death, as well.
Yes, she is trying to help.
We have been dealt a bad deck of cards.