Diagnosing and Treating Autonomic Disorder at Stanford - Marc Laderriere's story
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- Опубликовано: 27 янв 2013
- Marc Laderriere was experiencing a set of symptoms that were both ordinary and unusual: Hot weather sapped his strength and made him dizzy, yet he was sweating less and in cool weather no goose bumps ever appeared when he grew chilled. At Stanford, Laderriere found Safwan Jaradeh, MD, a rare specialist in autonomic disorders.
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Just saw a Stanford neurologist who basically told me previous diagnosis of POTS based upon testing in doctor office was not acceptable because it was Not a tilt table test. I have ME/CFS. Normally this doctor, like many neurologists she normally refuses to see CFS patients. But my primary called her. She told me all my problems are due to deconditioning. She refused to do tilt table test for me. She was contemptuous of the Stanford CFS clinic saying they recommend rest “...but we here at neurology believe in exercise.” I even have testing that shows my anaerobic threshold occurs at 78 bpm. Will not be going back to Stanford for anything. Doctors gaslighted me.
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That particular neurologist , (what is her name please?). Is going with her uneducated opinion. Too lazy to study any new information she remains a know-it-all while knowing nothing. There is very obvious reasons why de conditioning happens and it’s not laziness or sudden withdrawal from usual activities. Over time the exertion one needs to complete any activity increases greatly. Weather it’s due to decreased availability of energy to the body, decreased nerve conduction to run the muscles or just due to increasing pain of daily activities and previously enjoyable activities. It is something chemical or mechanical, biological. It is not due to laziness or depression. That neurologist is an abusive bitch. For me it was pain and a sense of lightheadedness and racing heart beat upon exertion. You just cannot force yourself to exercise through a level 8-10 pain. It’s not going to happen. Accompanied by dizziness to the point of vision going black, having to hold on to something so I wouldn’t fall or just sit right down on the ground it’s not something that a person can just overcome. It doesn’t let up. It’s ever present. You end up painted into the corner of your couch and bed barely able to fix a meal and keep yourself clean.
@@elsagrace3893 I don't remember her last name, but her first name was Olga. She isn't there anymore. I was so shattered by the event I never complained. Though I have found complaining to any of the managed care systems always fail. You have to be persistent and insistent to be heard and that takes energy. When you don't have the energy to walk across the room you can't spare any energy for complaining or worrying. I am turning to Ayurveda and Advaita Vedanta teachings. I enjoyed the phrase "painted into your couch and bedroom". Yep, me too.🌻
How are you now
Sentara Hospital in Virginia has been my best friend through this, but i am so greatful to have information from other physicians readily available on the internet to explain things a different way.
I have quite a few similar symptoms: pupils reacts different, I overheat and oversweat, I get fatigued quickly, I have a very high resting heart rate (being treated), I have refux and I can faint if I exercise too much (I used to do martial arts and if I didn't stop when I started to feel the blood drain, I knew I would faint and it could happen 3-4 times a session but I loved MMA). I also have Complex Regional Pain Syndrome in my left arm which is sort of linked to Autonomic Dysfunction. I am going to see doctors ans aee if I can get it diagnosed
Reading that I was nodding to it, yeah that's me, yeah that too...I have Ehlers danlos pain tho. Horrible reflux, last night was awful, I have mcad, with the associated allergies.
Same here fam💃👎🌿🍄 Best of luck with your diagnosis 🤞🏻 Sorry you hear your going through the same things, it's definitely no fun. My Crps is in my left foot, and caused a "non-union" on my broken foot. So I've just been rollin around willy broken bone nilly for the last 9 months👎😅 but I'll tell ya what, this long in a wheel chair has my arms looking freaking GREAT! lol sending remission vibes for a whole bunch of good days your way.
It's like the doctor is describing me. I am moving to France next year. How good is the health facility in France
"We gave him medication." Oh, it's a secret.
There are so many other treatments that could have been used besides from conventional medications which often cause unwanted side effects.Traditional Chinese Medicine could be employed to treat the underlying causes of autonomic nervous system dysfunction and improve the autonomic balance of the body without unnecessary side effects. People often ignore holistic treatments and trust explicitly in mainstream pharmaceutical medications which may not treat the underlying causes of the condition.
ॐ Jordan Gould what would you suggest I've tried everything natural and not natural
Too true! 100% agree with you!! 👍
Don't you hate that when people make a comment and then when you ask them a question they never come back... I would love for him to come back .
Yes I don't think they're going to find any of the answers with big Pharma... it's going to be through either Chinese medicine ayurvedic medicine or naturopath... not big Pharma .. they don't heal people.. they treat the symptoms just enough to keep you coming back for more and more meds because it's all about greed and money and the illusion of healing.
Autonomic disorders are the most difficult to treat. I wish there was hope for people like us
I felt like a normal person again after being on Hartmann's IV Saline Solution for one hour during endoscopy/colonoscopy. I'd been suffering POTS for months (since GI surgery) and it totally reversed the feeling. It wore off after about three days. Have asked my GP, my cardiologist and my upper GI surgeon if I can have regular IV saline sessions and they all refused. I just don't understand their attitude when it's the only thing that helped me. A year later and I'm now in even worse shape. Any suggestions would be appreciated.
TMS Dr schubiner
I recovered from dysautonomia (developed after COVID) when I figured out the cause (the medical profession is clueless). My dysautonomia turned out to be caused by wireless electronics, also known as electromagnetic hypersensitivity. When I eliminated all wireless devices from my immediate environment. I recovered fully. EVERY symptom resolved. No cell phone, no wifi, no laptops, no apple watches, no I pad, no smart utility meters, etc. These devices all run on high frequency electricity that travels at the speed of light through the air we breath. These high frequency electromagnetic fields are what transfers data between wireless devices. Unfortunately, EMF's can also disrupt the autonomic nervous system. I am a retired physician, previously a board certified general surgeon. I doubt my profession will ever figure this out. I have tried to tell them.
@@savedbygrace338are you better now
@@savedbygrace338how did you find out the cause
I have it because I’ve got Ehlers Danlos Syndrome. There’s no cure for me. My organs and tissue are stretchy so my nervous system will never work properly. But I’m okay with it, I’ve not known any different. It’s just harder and challenging as it’s gotten worse with age.
I'm suffering from sympathetic nervous system and doctors can't diagnose it how i can be treated?
How did you get diagnosed for EDS?
I'm glad for your attitude towards your predicament. It's the same attitude I take. I do not have EDS, just POTS, but I'm 3 if not 5 decades into this and am home-bound now, except on the better days.
My advice: Enjoy every day of your life how you can.
I have EDS too. But i never experience other autonomic dysfuntions symptoms. I was pro athlete super healty and energetic. Until covid, i got long covid now. 2 years in and i experience every one of dysfuntion symptoms. PoTS, BP issues, adrenaline dumps, brainfog, sleep issues, extreme joint pains etc :/
Oh that’s rotten, bless you 😔 Hope you manage to find a way to cope with it. I’ve got a wheelchair which has helped wonders, all the best with learning ways to keep on living as it’s very disabling 🙏🏼
😱 shocked not all dr. Know this! I'm actually going to another state in a few days to get care for my issues- as here I have gotten Judged and scoffed- Till I found Dr. Hsia- he understood and very educated on my type of disorder. From belly issues to pin pricks - When we go to ER Not all of us wanna be high we wanna be better-
Invisible illnesses are real :( Unfortunately 😢😭
I have had Automatic Failure for 13yrs and dealt with doctors the whole time, they know! I've had one doctor come right out and told me "some doctors don't believe in POTS". It's to keep millions off disability.
They Live I can't stand it when the just leave me sick crying- I had one dr from the pain teamsters UCLA Roll his eyes at me- the call the shrink! I vibe for your health and safety. 💙 I'm here for you!
@@TiaSnoozy805 Thanks! Fought tooth and nail against POTS specialist to get my disability. I manage my symptoms well. I actually went to a POTS support group meeting in LA and had one of the nurse "specialists" get up and lectured us on how it was all in our heads! They are actively trying to suppress this illness. I found there are some doctors that are sympathetic to this condition but all the "specialists" I sought out are not. Hope you get better, I understand what you're going through💙
They Live Yep all in our heads:( I've heard it - Support is awesome if u get the right group:) I like networking- New friends and knowledge 💙 Even just a hello helps us home bound /Ill. I hope you are doing well and are keeping warm:)
Do you find many people come in for care that have had thoracic sympathectomies at T2 levels?
I've had 3 cervical surgeries and 2 thoracic rib resections and now have this disorder. My doctors attribute it to that.
Can quitting an antidepressant you have been on for a long time, too fast, cause autonomic disorders?
John, I don’t think so, but an autonomic disorder definitely causes depression. My daughter is high functioning autistic, and I suspect it’s connected. We didn’t know she was autistic till this year at 16 years old. Anxiety and depression started around 12, it took so long to figure out what’s going on.
@@ritabiggers I'm a high functioning autistic as well, and I ended up having to diagnose my own pathology connecting the dots over the years with autonomic nervous system disorder that was causing physiological hell that they were writing off his anxiety. Propranolol fixed everything. Just 20mgs a day
Sure I am to does she have much pain and ocd
Is this the same Stanford located in the Bay Area, CA?
Yes!!! I was diagnosed with POTS by Dr. Muppidi through the Autonomic Disorders Program!!! Stanford is in Palo Alto, CA.
@@Jazzyjen1997 oh nice, that’s great news. I live about 20 minutes from Palo Alto.
@@Jazzyjen1997 are they treating/helping people there with autonomic nervous system disorders/dysautonomia/POTS or only for diagnosis?
I have a huge problems with gastric ,bladder ,sweeting, blood pressure, erection, heart beating ,tempreture i dont know what to do im so lost
Get tested for lymes disease. Read up on supplements. I used From Fatigued to Fantastic book by Dr. Teitelbaum he has chanel on here. And Wild and Well by Dani Williamson
the science here is total quackery. we're being enslaved by disease per the concept of the Faustian bargain, as rooted in oligarchical Satanism plainly rooted in the Knights Templar etc... Humans in relation to these ancient institutions are not capable of dealing with these issues. the enemy is sentient and we are not.
What antibiotics where used to treat Lyme disease?
I'd love to know this too! I've tested positive for Borrelia and I'm pretty sure I've had for over 10 yrs. Between that and some very high level stress I believe created the perfect storm and here I am with no sweating, rapid hr, bp fluctuations, tinnitus, head pressure, etc,
Usually doxycycline is used or was in my case.
Is alpha lipoic acid good for autonomic neuropathy?
My neurologist gave me my 2nd time around diagnosis of dysautonomia yesterday. He is having me start alpha lipoic acid (600mg 3x's a day) and nortriptaline (10mg at about 4pm).
I received the diagnosis the first time around from cardio back in 2013, about a year after I had MERS (another coronavirus).
My autonomic Dr has me starting this as well. 200 mg 3xday, with a Pepcid daily as well.
@@leubanks3921 Pepcid causes bone loss. WTF would a doctor prescribe it for long term use?
@@elsagrace3893 wow I didn't know that. She said it helped while using ALA.
I take this think it helps a little after few minths
so where do you guys suggest to go for ans problems?? I have been to Dr jaradah tried florineg but made me feel worse :/
IVIG for autoimmnity
Really?
I finally found a physical therapist who said he could help me with POTS. He works in a neuro rehab unit. I think the key might be looking for help from a rehab specialist rather than a regular physical therapist. Interestingly he wants me to see the speech therapist first so she can help me stabilize my symptoms prior to beginning physical therapy. This group works with patients with traumatic brain injury, dysautonomia, MS etc.
Is it helping??
@@pallavimehta9445 yessss😑
What was the medication the helped with his sweat function
I take Robinbul for my sweating. Works like a charm.
Is that for people who do NOT sweat? I never sweat.
@@leubanks3921 I never sweat either!
Rather than the "sweating function" it looks to me that these two guys both had a problem with excessive food intake.
That was very rude
@@yorocco1 Nothing rude there. Just facts. Pointing out that there is a problem with food intake is actually a free health suggestion. Diabetic neuropathy is behind the corner.
animal-based ones are the most toxic “food”
@@DominionMovementDotOrg Anything-based food isn’t that healthy, really.
Animals are just fine. Just make sure it didn’t die too long before you consume it.
@@xXbaby_gurl88 I wasn’t. Just objective.
Keep in mind that considering a statement about excessive food intake in overweight individuals offensive is a mistake.
The day you assign the stigma label to something, attempts at opening people’s eyes are unjustly turned into useless mocking.
Keep your focus on facts.
The continuity equation would be a good starting point.
Notice the LOAD OF STRESS this guy was under... he had a very stressful job that he was addicted to... you can find his full story on their website. Stress is a factor people.... physical and mental.
As somebody who has had dysautonomia for decades if not throughout my life, I'd say it's a bit of a chicken and egg problem.
That is, one either gets dysautonomia because one puts too much stress hormones in the body due to extreme work/emotional stress or because the body is fighting something (like Lyme disease) and thereby provides an excessive amount of stress hormones to the body, which increases the capacity to work.
That is, often there can be a genetic component to dysautonomia, as in having naturally higher stress hormone levels than others, which leads to the slow development of the disease (as in stress hormones narrow blood vessels, which reduces blood volume (= the reason for increased heart rate or fainting upon standing), which increases the need for stress hormones, which reduced the blood volume further - and there, the perfect deteriorating cycle of the disease).
That is, you are completely correct. Stress is a factor but the question is what is the source.
@@samhartford8677 Agreed. Mine was brought on by Lyme too.
@@michele21auntiem Sorry for your condition. My source is definitely genetics. Never had normal sleep or gastric patterns even as a small child. The results are probably about the same (aside of those with EDS). Hence it's a 'syndrome'.
How are you going on
@@Truerealism747 doing better. How are you?
complete and utter quackery. outrageous nonsense, this doctor is totally lost. as is his patient.