Dr. Anne Louise Oaklander - Small-fiber Neuropathy: Contributor to Unexplained Multi-symptom Illness

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Dr. Anne Louise Oaklander - Small-fiber Neuropathy: Contributor to Unexplained Multi-symptom Illness

Рет қаралды 15,455

The ME Action Network

Күн бұрын

Пікірлер: 62

@cbryce9243 Жыл бұрын

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.

@katiedangelo404 2 жыл бұрын

Ive been treated like a mental patient...even after having a diagnosis of SFN.... the medical community caused C-ptsd

@User-q6x3b Жыл бұрын

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

@magnusthoren3852 11 ай бұрын

Most mental patients are not mental patients, they have SFN.

@Truerealism747 8 ай бұрын

@@magnusthoren3852I have fybromyalgia.aspeegers CFS add heds how do.we no if have sfnif don't have pain in touch

@jimmock1155 2 жыл бұрын

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.

@marcusaurelius2242 2 жыл бұрын

I have you tried IVIG?

@Mark-ib5bq Жыл бұрын

@@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.

@scotteranger4524 7 ай бұрын

@@Mark-ib5bq How are you now?

@HicksGribble Ай бұрын

6 years in, last 4 being unbearable. I’d be happy to die as well. I do the best I can but my life sucks now. Im a shadow of my former self and my condition is getting worse every year. The medical community will quickly pivot to “awareness” but they’ll never come clean on the cause and they’ve yet to “cure” anything.

@savannahlomeli6136 3 жыл бұрын

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 2 жыл бұрын

Is there anything that can be done about it?

@Mark-ib5bq Жыл бұрын

@@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.

@Mark-ib5bq Жыл бұрын

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.

@Mark-ib5bq Жыл бұрын

Savannah, I am on the 8th month of IVIG therapy and no relief yet unfortunately.

@Truerealism747 8 ай бұрын

@@Mark-ib5bqwhat are you symptoms

@pbartolo7324 3 жыл бұрын

I'm so so tired knost with autonomic nerve dysfunction and recently fibromyalgia I believe I am dealing with SF small fiber neuropathy

@jeffreyw.7044 4 жыл бұрын

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

@katiedangelo404 2 жыл бұрын

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....

@JennySimon206 9 ай бұрын

Take a good laxative to help u poop.

@pbartolo7324 3 жыл бұрын

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

@marcusaurelius2242 2 жыл бұрын

If you think she will answer you, you are insane. Read her reviews as a physician.

@dinahconnell6947 3 ай бұрын

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😢

@playdulonoficial6540 5 ай бұрын

sfn cause twitchs/fasciculation? thats my question.

@roseo322 Ай бұрын

Yes, according to several newer studies. SFN was found in up to 80% of those with diagnosed benign fasciculation syndrome.

@jesseautumnmusic 11 ай бұрын

Vitamin B6 gave me SFN. It’s a nightmare.

@cindy5515 10 ай бұрын

Same, it’s the worst.

@hawk28912 7 ай бұрын

were u diagnosed skin biopsy

@sarahallibone 5 ай бұрын

Same. It's truly awful (and ongoing after 1 year unfortunately)

@hawk28912 5 ай бұрын

@@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

@hawk28912 5 ай бұрын

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

@hawk28912 7 ай бұрын

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

@burnswhenpees 15 күн бұрын

Tilt table test with qsart. That's how I was diagnosed with POTS, and SFN.

@JamesBrown-hs6vg 3 жыл бұрын

Can vitamin B6 toxicity cause this ?

@rachellewis5016 3 жыл бұрын

Yes.

@apacur 2 жыл бұрын

Yes

@Betzabeth87006 2 жыл бұрын

Yes!!

@boop5287 Жыл бұрын

Yes!! Don’t take too much

@jesseautumnmusic 11 ай бұрын

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. 😢

@beatrizviacava-goulet3450 3 жыл бұрын

Sodium seems common is current able mineral...isn't it... Morgellons varieties comes to mind ...

@crystaljohnson2970 3 жыл бұрын

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.

@beatrizviacava-goulet3450 3 жыл бұрын

Clorophyll oxigenates the system many blessings!

@tammynorwitz6711 4 жыл бұрын

Dr Oaklander I appreciate all your efforts and research in SFN! I have watched all of your KZfaq 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

@MrApplewine 4 жыл бұрын

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.

@tammynorwitz6711 4 жыл бұрын

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!

@3131maggie 2 жыл бұрын

@@tammynorwitz6711 How did his appointment go? What doctor at Johns Hopkins did he see? Thank you so much!

@varitalwar3153 2 жыл бұрын

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.

@carolyningalls4580 3 жыл бұрын

For heavens sakes get genetic testing

@apacur 2 жыл бұрын

Bad idea

@cbryce9243 Жыл бұрын

@@apacur why?

@scotteranger4524 2 жыл бұрын

READ HER REVIEWS. NOT GOOD. She is a clinician.

@cbryce9243 Жыл бұрын

😡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.

@scotteranger4524 7 ай бұрын

@@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.