I've had health issues my whole life, I'm 67 now. My daughter was diagnosed a few years ago. So I finally know what us wrong. I had major knee surgery at 19, as I got older everything went wrong medically. I hemmoraghed after 3 deliveries, prolapse at 37, hysterectomy at 38. I gave 2 pints of blood, he needed both. I now need both shoulders replaced and my other knee. My cervical spine is full of arthritis and spurs.
@MichelleCoreyThyroidCure4 күн бұрын
Thank you for this informative discussion. The information you've shared will make a significant difference, and I will ensure it reaches all my colleagues. We frequently find MCAS in many EDS patients. Still, we see more and more cases pop up in people without EDS who have been diagnosed with IBS, IBD (diarrhea and constipation), nausea and vomiting, autoimmune spectrum disorders, chronic urticaria, hives, chronic inflammatory brain conditions like ADHD/ADD, mood disorders, depression, bipolar, insomnia, the full spectrum of neurological conditions, red, scratchy and blurry eyes, sinusitis, chronic pain syndromes (esp ice pick or debilitating localized pain) cervical injuries, food sensitivities, celiac, toxic exposure (esp mold) and POTS and the lists go on. You are correct that the diagnosis is tricky, especially when ordered in the ER or from an allergist or specialist. Tryptase is elusive, and even 24-hour n-methyl-histamine won't reveal much - because you have to catch it right when it's happening! These mediators don't always present which makes this diagnosis tricky - and though not the best, sometimes we do resort to mast cell stabilizers to calm things down and they work MOST of the time while we look for the triggers - infectious (usually) stress and toxins, This education is not just for people with an EDS diagnosis but for everyone with this sequelae. I am grateful for your erudite discussion and attention, especially with pain patients.
@Anotherhumanexisting5 күн бұрын
How are these conditions Dr. Chopra talks about so in depth are not more well understood and treated for regular people? This video is 4 years old. I’m 26 and I know myself, and at least 50% of everyone I know (of all ages) have struggled with things like EDS pain, POTS, MCAS, gut problems, etc since childhood. Yet I feel like I’m out here treating myself. Learning from KZread and Reddit, etc and only going to my doctors when I need something prescribed or to fight to try to get a test ordered… but in reality we’re treating ourselves…and it’s expensive and draining.
@Anotherhumanexisting5 күн бұрын
How are these conditions Dr. Chopra talks about so in depth are not more well understood and treated for regular people? This video is 4 years old. I’m 26 and I know myself, and at least 50% of everyone I know (of all ages) have struggled with things like EDS pain, MCAS, gut problems, etc since childhood. Yet I feel like I’m out here treating myself. Learning from KZread and Reddit, etc and only going to my doctors when I need something prescribed or to fight to try to get a test ordered… but in reality we’re treating ourselves…and it’s expensive and draining.
@billieruth883112 күн бұрын
As a new born two moths premi- two weeks old , something set off my immune system. I was allergic to all forms of milk, severe asthma & allergies. I was allergic to dust, animals, smoke, grass, carpet, all but meat a few canned vegetables and a few fruits. Almost put in a bubble. I was allergic to the serum that held the allergy shots together and the syringe. My meds had to be special made outta state , given to me through a gold syringe and needle , or silver , I don’t remember. I had anaphylactic shock many times, severe asthma, severe allergies, bladder issues, welts, high fevers they iced me down in the hospitals. they had to ice me down, allergic to vaccines. Double lung pneumonia every year 1-2 times a year till I was 7 or 8. Fell out of a moving vehicle at four, hitting my head and causing severe migraines to hit , along with my allergies. We suspected I was allergic to my fluctuations in hormones.I couldn’t breath out both nostrils till 7th grade. Grade school and younger, I woke up eyes sealed shut from dried crust from allergic reactions. By junior high , I could eat many foods , and less reactions. Eventually I rarely reacted to much even lungs were great. 2007 I get Lyme , 100s of nymph ticks all over me. Got bit again in 09… realized Lyme wasn’t going away , treated then hit it hard from 201 0:405-19 Get CoVid , whole body nerves went on fire, felt like I was radiated inside. 2021 dr put me on ivermectin to treat Lyme coinfection, year later my Lyme is in remission. From late 2019 -2021 I had wide spread neuropathy, I also had a tumor on my pituitary, causing adrenaline dumps. Dr believes after 3 years of digging, I got reactivated MCAS . Only it was attacking my organs , nerves and brain, not how it was when I was young. I had so much adrenaline I had became my own epi-pen. Which is why we think my throat wasn’t closing and swelling shut like it did when I was little. Why it took so long to figure out. I’m 2021 everything went boom, CoVid brain infection 🤷🏼♀️ but I hallucinated, personally change, never violent, but sometimes got angry , didn’t call people names, but mostly fled or froze, …. autoimmune immune encephalitis. I lost almost every friend I had, a fiancé… no one believed I was hitting a ten pain in my nerves every 4 hours when my meds wore off. Three years of the worst hell and torture!! I had natural childbirth with one of mine, and this pain was way worse. But you can’t just go around screaming 🤦🏼♀️ I stayed in shock three years , in severe pain , 3-4 hours sleep. MCAS!! Dr believed the only reason i wasn’t having seizures was all the adrenaline. When I had the huge reaction in 21, I couldn’t eat for like 6-8 weeks, everything burned. Organs kidneys!! I ate just a bite of a cracker brand from Europe , a cracker or two for 8 weeks. Before we realized it was MCAS. I’m allergic to vaccines , medically excused for decades. The allergist I had for 25 years wouldn’t see me unless I got a vaccine, neither would the neurologist. My family Dr and I researched and we stumbled on MCAS. It wasn’t called that when I was little. So I’ve been on antihistamines, other things, cannibis is what I did for pain… needed opieds but no way was I getting on them. I feel like iv been tortured half my life
@TammyOne-rd9ng17 күн бұрын
Long exposure to mold started mine. Well mold and severe stress
@sarahgordon2597Ай бұрын
Wow. If pots and eds are autoimme, and we could start treating the cause instead of symptoms, maybe I wish get better
@Mokshana.ankaraАй бұрын
omg 3 minutes in and you're already spot on with my neurologist's assumption about my diagnosis: functional neurological disorder 🙄
@AmyThePuddytatАй бұрын
That is definitely not how the Greek word _diastole_ is pronounced.
@melissafarrugia9531Ай бұрын
❤😂❤😂❤
@julierogers4473Ай бұрын
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 🥺
@pippamellon8678Ай бұрын
I was very active and led a busy life like Becky ..also Cptsd..other trauma..
@pippamellon8678Ай бұрын
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..
@shericontrary25352 ай бұрын
I just read an article about how melatonin might help people with MCAS
@shericontrary25352 ай бұрын
maybe vaccines are a factor
@shericontrary25352 ай бұрын
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.
@darilekron45902 ай бұрын
Deficiency of magnesium can also lead to inability to cope with sounds.
@handsofdoubt313 ай бұрын
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?
@JasonRyanMills3 ай бұрын
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
@melissafarrugia95313 ай бұрын
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. ❤
@MichaelMerritt3 ай бұрын
Dr. Virginia McEwen doesn't see patients via Telehealth in the US by chance does she?
@staceya.7753 ай бұрын
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
@rickshawley76833 ай бұрын
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.
@theangrytiredzebra3 ай бұрын
Where are these conferences? I would really love to go.
@Whitewillow2213 ай бұрын
Childhood vaccine injuries from all these diseases is always overlooked
@naomisherred1663 ай бұрын
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.
@madelinesabatello18454 ай бұрын
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!
@Truerealism7474 ай бұрын
Anything in cci causing it in eds
@shannon00574 ай бұрын
disclosures!?!? was not even a full second on the screen! makes me Curious!
@marcusroscoe18274 ай бұрын
Can one cxa in suppine on a Mri or does it have to under load from a upright Mri ?
@theseventh52045 ай бұрын
Alot of these sound like a CSF leak.
@thegracklepeck5 ай бұрын
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).
@somcana5 ай бұрын
:I am not sure why ASA is listed both as trigger to avoid and a treatment? @ 27:35 to 28:11.
@Needless2say5 ай бұрын
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.
@karinesavard20162 ай бұрын
You're bang on with your list !! 🤔 makes you wonder why there is this war on humanity!!
@shiarafigoni14645 ай бұрын
BARTONELLA, LYME, MOLD CAUSES THIS
@boolets225 ай бұрын
HI ISAACS MOM! ITS ME JSPONTANEOUS!!!!
@timmyschannel55 ай бұрын
What about dizziness and dysfunction upon sitting ?
@countdadcula44755 ай бұрын
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
@jonathanvelting99455 ай бұрын
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/
@latinaustralia3 ай бұрын
I have the same thing. This almost 7 years and it came onset after several traumatic experiences since 2010. I was reading into polycythemia Vera which is blood disorder categorised as a rare type of cancer but I beg to differ. Our immune system is compromised when trauma is not released. My advise to you is to find a good immunologist that can explain your blood work, check especially if you a high count of red cells and (I just found this out) keep hydrated and I mean not just water, but cellular hydrated. Hope it helps
@kriskozolanka26656 ай бұрын
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..
@iancookson80346 ай бұрын
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?
@BasedWifeLife6 ай бұрын
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.
@florabraswell-nm1re6 ай бұрын
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 🙏💜
@florabraswell-nm1re6 ай бұрын
Can someone recommend a good Neurosurgeon or neurologist in the Jax Florida area?
@HagsRideOrDie6 ай бұрын
2019 when this was posted and we still cant make a PA system with a microphone that doesn't feedback.
@edibleapothecary6 ай бұрын
Can hEDS affect the brain and cause Tourettes symptoms
@jordanhancock2793 ай бұрын
It is possible. Along with seizures.
@leoniewatt99296 ай бұрын
Can you treat overseas patients?
@leoniewatt99296 ай бұрын
Does getting rid of the infections get the symptoms to dissipate? He hasn't given any treatment indications? Anyone.
@karenhanson3595 ай бұрын
Which infections? The initial viral infection that damages the vagus nerve? The resulting SIBO issues? I haven’t looked at his other literature yet, but I suspect he’s going to say just to treat these all individually, just as you would assume before watching this. I do think this may help prioritize which to treat first and how much time/money to spend on treatments.
@Slowleek4 ай бұрын
He mentions treatments in this video: kzread.info/dash/bejne/aquYuK-vcsmyc9Y.htmlsi=-YK9c07qKfwgCUqe
@elizabethdesmet896 ай бұрын
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!
@ruparkyitin7 ай бұрын
Could EDS person have nocturia or Frequency only at night??
Пікірлер
I've had health issues my whole life, I'm 67 now. My daughter was diagnosed a few years ago. So I finally know what us wrong. I had major knee surgery at 19, as I got older everything went wrong medically. I hemmoraghed after 3 deliveries, prolapse at 37, hysterectomy at 38. I gave 2 pints of blood, he needed both. I now need both shoulders replaced and my other knee. My cervical spine is full of arthritis and spurs.
Thank you for this informative discussion. The information you've shared will make a significant difference, and I will ensure it reaches all my colleagues. We frequently find MCAS in many EDS patients. Still, we see more and more cases pop up in people without EDS who have been diagnosed with IBS, IBD (diarrhea and constipation), nausea and vomiting, autoimmune spectrum disorders, chronic urticaria, hives, chronic inflammatory brain conditions like ADHD/ADD, mood disorders, depression, bipolar, insomnia, the full spectrum of neurological conditions, red, scratchy and blurry eyes, sinusitis, chronic pain syndromes (esp ice pick or debilitating localized pain) cervical injuries, food sensitivities, celiac, toxic exposure (esp mold) and POTS and the lists go on. You are correct that the diagnosis is tricky, especially when ordered in the ER or from an allergist or specialist. Tryptase is elusive, and even 24-hour n-methyl-histamine won't reveal much - because you have to catch it right when it's happening! These mediators don't always present which makes this diagnosis tricky - and though not the best, sometimes we do resort to mast cell stabilizers to calm things down and they work MOST of the time while we look for the triggers - infectious (usually) stress and toxins, This education is not just for people with an EDS diagnosis but for everyone with this sequelae. I am grateful for your erudite discussion and attention, especially with pain patients.
How are these conditions Dr. Chopra talks about so in depth are not more well understood and treated for regular people? This video is 4 years old. I’m 26 and I know myself, and at least 50% of everyone I know (of all ages) have struggled with things like EDS pain, POTS, MCAS, gut problems, etc since childhood. Yet I feel like I’m out here treating myself. Learning from KZread and Reddit, etc and only going to my doctors when I need something prescribed or to fight to try to get a test ordered… but in reality we’re treating ourselves…and it’s expensive and draining.
How are these conditions Dr. Chopra talks about so in depth are not more well understood and treated for regular people? This video is 4 years old. I’m 26 and I know myself, and at least 50% of everyone I know (of all ages) have struggled with things like EDS pain, MCAS, gut problems, etc since childhood. Yet I feel like I’m out here treating myself. Learning from KZread and Reddit, etc and only going to my doctors when I need something prescribed or to fight to try to get a test ordered… but in reality we’re treating ourselves…and it’s expensive and draining.
As a new born two moths premi- two weeks old , something set off my immune system. I was allergic to all forms of milk, severe asthma & allergies. I was allergic to dust, animals, smoke, grass, carpet, all but meat a few canned vegetables and a few fruits. Almost put in a bubble. I was allergic to the serum that held the allergy shots together and the syringe. My meds had to be special made outta state , given to me through a gold syringe and needle , or silver , I don’t remember. I had anaphylactic shock many times, severe asthma, severe allergies, bladder issues, welts, high fevers they iced me down in the hospitals. they had to ice me down, allergic to vaccines. Double lung pneumonia every year 1-2 times a year till I was 7 or 8. Fell out of a moving vehicle at four, hitting my head and causing severe migraines to hit , along with my allergies. We suspected I was allergic to my fluctuations in hormones.I couldn’t breath out both nostrils till 7th grade. Grade school and younger, I woke up eyes sealed shut from dried crust from allergic reactions. By junior high , I could eat many foods , and less reactions. Eventually I rarely reacted to much even lungs were great. 2007 I get Lyme , 100s of nymph ticks all over me. Got bit again in 09… realized Lyme wasn’t going away , treated then hit it hard from 201 0:405-19 Get CoVid , whole body nerves went on fire, felt like I was radiated inside. 2021 dr put me on ivermectin to treat Lyme coinfection, year later my Lyme is in remission. From late 2019 -2021 I had wide spread neuropathy, I also had a tumor on my pituitary, causing adrenaline dumps. Dr believes after 3 years of digging, I got reactivated MCAS . Only it was attacking my organs , nerves and brain, not how it was when I was young. I had so much adrenaline I had became my own epi-pen. Which is why we think my throat wasn’t closing and swelling shut like it did when I was little. Why it took so long to figure out. I’m 2021 everything went boom, CoVid brain infection 🤷🏼♀️ but I hallucinated, personally change, never violent, but sometimes got angry , didn’t call people names, but mostly fled or froze, …. autoimmune immune encephalitis. I lost almost every friend I had, a fiancé… no one believed I was hitting a ten pain in my nerves every 4 hours when my meds wore off. Three years of the worst hell and torture!! I had natural childbirth with one of mine, and this pain was way worse. But you can’t just go around screaming 🤦🏼♀️ I stayed in shock three years , in severe pain , 3-4 hours sleep. MCAS!! Dr believed the only reason i wasn’t having seizures was all the adrenaline. When I had the huge reaction in 21, I couldn’t eat for like 6-8 weeks, everything burned. Organs kidneys!! I ate just a bite of a cracker brand from Europe , a cracker or two for 8 weeks. Before we realized it was MCAS. I’m allergic to vaccines , medically excused for decades. The allergist I had for 25 years wouldn’t see me unless I got a vaccine, neither would the neurologist. My family Dr and I researched and we stumbled on MCAS. It wasn’t called that when I was little. So I’ve been on antihistamines, other things, cannibis is what I did for pain… needed opieds but no way was I getting on them. I feel like iv been tortured half my life
Long exposure to mold started mine. Well mold and severe stress
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.
You're bang on with your list !! 🤔 makes you wonder why there is this war on humanity!!
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/
I have the same thing. This almost 7 years and it came onset after several traumatic experiences since 2010. I was reading into polycythemia Vera which is blood disorder categorised as a rare type of cancer but I beg to differ. Our immune system is compromised when trauma is not released. My advise to you is to find a good immunologist that can explain your blood work, check especially if you a high count of red cells and (I just found this out) keep hydrated and I mean not just water, but cellular hydrated. Hope it helps
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
It is possible. Along with seizures.
Can you treat overseas patients?
Does getting rid of the infections get the symptoms to dissipate? He hasn't given any treatment indications? Anyone.
Which infections? The initial viral infection that damages the vagus nerve? The resulting SIBO issues? I haven’t looked at his other literature yet, but I suspect he’s going to say just to treat these all individually, just as you would assume before watching this. I do think this may help prioritize which to treat first and how much time/money to spend on treatments.
He mentions treatments in this video: kzread.info/dash/bejne/aquYuK-vcsmyc9Y.htmlsi=-YK9c07qKfwgCUqe
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??
Yes, night time is the worse for me