Wow. If pots and eds are autoimme, and we could start treating the cause instead of symptoms, maybe I wish get better

omg 3 minutes in and you're already spot on with my neurologist's assumption about my diagnosis: functional neurological disorder 🙄

That is definitely not how the Greek word _diastole_ is pronounced.

❤😂❤😂❤

I had the hives for 28 years. Started 3 months after I had my first child.. had some kind of heart issues since I was born. I just thought everybody was like that.. allergist put me on hismanol For chronic cold touch UTA cura.. I would have reactions to tomatoes and chocolate at times. What is on it for years every day. In 99 my heart took off and wouldn't stop. What is put on all kinds of heart meds didn't work made me worse. Already had low blood pressure. Finally told my doctor if you don't send me somewhere I'm going to die. Finally a cardiologist. He said the hismanol is what did it.. bladder infection on most killed me in 2011. Rounds and rounds of horrible antibiotics. Was going blind from the antibiotics I knew I was dying. Went to a Chinese acupuncture and medicine doctor. Got off all the antibiotics. He healed my bladder infection. And he healed my hives. 6 months later I went numb from the bottom of my foot up to my waist. That was 12 years ago this month. Now to fail back surgeries. Pain management doctor has killed me with diazepam. I always been hypersensitive to medication. This explains it all 🥺

I was very active and led a busy life like Becky ..also Cptsd..other trauma..

I this is amazing..your describing all my symptoms. And my triggers..I have constant pain..some days worse than others..diagnosis fybro..in 2008..I never believed it was…I got friendly with a girl who was Auvhedic..she told me two years back she thought this was what I had..

I just read an article about how melatonin might help people with MCAS

maybe vaccines are a factor

My symptoms are feeling hypoglycemic and feeling sugar highs if I eat sugar/ carbs. I also have brain fog triggered by histamine food. I've been on the low histamine diet and I no longer feel as hypoglycemic. I'm 60 years old and I'm wondering why after all these decades no doctor ever suggested anything to me about eating low histamine. I read that histamines affect cytokines and cytokines affect blood sugar. I used to eat hard candy because I felt hypoglycemic but then I would have a reaction to the sugar and now I no longer need to eat candy.

Deficiency of magnesium can also lead to inability to cope with sounds.

I have a question around 29 minutes where you talk about nerves registering pain. I have a question or challenge to that. As a long term back pain sufferer I've done extensive research on that topic. My understanding is that the latest Neurological stance on pain is that there are no nerves which register pain. Pain is said to be an output of the brain based on multiple factors. The nerves register physical phenomenon such as pressure and temperature but not pain as such. Just wondering if there is any clarification on this very important point?

This video is 5 years old, there is zero improvement in Canada. I've been diagnosed with EDS/marfan and the process to get it in Canada has been a lesson in madness. Doctors simply either don't know anything about the spectrum, of if they do, they run for the hills from you because it's too complex. In Canada, with these disorders, you are doomed to take what crumb of care you can get. Especially so if you advocate for yourself and end up being right; that you do in fact have this disease. Advocating for yourself with EDS in Canada is a form of self inflicted abuse and you end up with severe PTSD from the gaslighting, avoidance, denialism, and rejection of doctors and the utterly broken and archaic medical system. Pro tip for all the willfully ignorant doctors in Canada with a patient who suspects they have EDS: google

Thanks for this great presentation. I have a low lying caecum and I am extremely underweight, currently have my initial genetics appointment scheduled in May. The presentation has covered treatments and how they are advantageous for Ehlers Danlos patients who I am suspecting I am in that category. ❤

Dr. Virginia McEwen doesn't see patients via Telehealth in the US by chance does she?

20:00 My immunologist ruled it out because my trypase levels are normal but i’m in an MCAS group and EVERYONE thinks I have it. All this time the only thing that’s given me any kind of relief is Benadryl and DAO enzymes. Most importantly I basically can’t eat anything and I even have to be careful for environmental triggers

I have high prostaglandin d2, Experience severe muscle pain, bone pain.Weakness stomach issues and anxiety and nervousness. started taking ketotifen, It helped a lot, gastrochrome Seem to make me worse.What else do I need to be doing. Is still have no energy and very weak.

Where are these conferences? I would really love to go.

Childhood vaccine injuries from all these diseases is always overlooked

My son also did this for me! I'm 50 and have EDS, fibromyalgia, visceral and skin hypersensitivity amongst other conditions. It is helping me stay up most of the day (used to be in bed all day)and sleeping way better at night. Obviously doesn't fix everything but the dial has definitely gone way down on my pain. So grateful this is being more recognised. Thanks for the video.

Dr. Afrin s first visit is 8000.00! I really wanted to go to him but I couldn't afford it, I think that is really shameful!

Anything in cci causing it in eds

disclosures!?!? was not even a full second on the screen! makes me Curious!

Can one cxa in suppine on a Mri or does it have to under load from a upright Mri ?

Alot of these sound like a CSF leak.

This was fascinating to see. I'm currently waiting to be tested for EDS because while hEDS generally fits my symptoms, I was born with bilateral hip dysplasia and it's possible I have one of the other types. (Easy bruising, etc).

:I am not sure why ASA is listed both as trigger to avoid and a treatment? @ 27:35 to 28:11.

I dont really care what the name of the condition of health issues. The real questions are what causes it and what removes it. The other questions why are people more ill now with allergys. I am thinking Psudo-foods, latent (hidden)dental infections as in root canals etc. Heavy metals, molds- (biofilms) -candida, nutrient deficiency, parasites, RF, wifi, data etc. Gall bladder-liver stones. Neuro toxins, BPA's, acetylhyde air freshners chemicals from modern homes formaldahyde-chemicals etc.

BARTONELLA, LYME, MOLD CAUSES THIS

HI ISAACS MOM! ITS ME JSPONTANEOUS!!!!

What about dizziness and dysfunction upon sitting ?

Stay away from PPI's unless absolutely necessary, better to change your diet as hip fractures And degenerative disk disease are much more prevalent than what they knew at the time in 2016

I have symptoms that I can only characterize as "aquagenic pruritis" Can you plz link that and "mast cell activation"? I think that there is a correlation there but I am having a hard time finding any research about it/

Agasp...That was Brilliant...with the science mapped out. I feel I 'm getting closer to understanding me. It appears we all are just beginning to see work in front of us is daunting. Head down ...move forward on all frontals. Thank you..

I have only just discovered this and thought it was fascinating. Interesting to see how our sons various conditions might be related. Has this been updated or used in clinical settings?

Thank you so much for helping me understand what is happening in my own body. Most Doctors have not even heard about it and it can be incredibly frustrating. This helps a lot.

I was told from a Nerve conduction test, l have peripheral neuropathy from my type 2 diabetes,plus severe carpal tunnel syndrome in both hands from an EMG l have a pinched nerve in the Lumbar spine, plus a curved spine in the lumbar spine, they plus l had a benign tumor removed years ago in my neck which l am sure l am having some type of problem from that surgery! I am in severe pain every where , it’s so bad that l feel l have every autoimmune condition there is , l wake up with flu like symptoms l have gastrointestinal symptoms, my hearing is lessened, my eye sight is failing , l go everyday with a hope in Prayer , my quality of life is none , l push myself to go everyday with Gods help,but l can’t continue on like this , l think sometimes that Doctors hate me because l have a complex condition 😢 Please Pray that l find a good Doctor like Dr, Henderson thank you 🙏 l will Also Prayer for you 🙏💜

Can someone recommend a good Neurosurgeon or neurologist in the Jax Florida area?

2019 when this was posted and we still cant make a PA system with a microphone that doesn't feedback.

Can hEDS affect the brain and cause Tourettes symptoms

Can you treat overseas patients?

Does getting rid of the infections get the symptoms to dissipate? He hasn't given any treatment indications? Anyone.

Thank you for for your thorough webinar presentation. Do you ever make recommendations to other well trained pelvic health physiotherapists located near me: (USA near Canadian border) counties including Whatcom, Skagit, Snohomish, & King counties? Do you make a one time ZOOM medical appointment? I plan on reviewing the 2 websites you listed. Lastly, What is the name for the postgraduate pelvic health training you mentioned? Thank you!

Could EDS person have nocturia or Frequency only at night??

What about the Cervical instability issues seen in EDS patients??

Caused by ciprofloxacin the evil drugs

The one thing that all EDS recordings and presentation have in common is terribly poor audio, even up to international level conferences with major speakers giving vital information. It’s very disappointing.

THANK YOU!!!!

This was amazing! Thank you for sharing. Do you have any US 🇺🇲 connections who may have recommendations/resources?