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- Опубліковано 9 чер 2024
- Dr. David Saperstein talks about What EDS (Ehlers-Danlos Syndrome) is and breaks down manifestations, associated and common issues, specialists involved, difficulty diagnosing EDS, the different faces it can take on, types of EDS, and the genetics of EDS. If you would like more information, visit our website. complexneurology.com/
Oh dang. I think this just answered the medical mystery that was my childhood.
Have you discovered the benefit of "supra-physiologic" Thiamine? Elliot Overton covers this...
8:22 I'm sitting here crying now, and feel so very understood! I have all these diagnoses, and it's because of piecemeal treatment, and being written off as hysterical because I have a PTSD diagnosis too. I am still not formally diagnosed, but I believe in myself enough to advocate and refuse mistreatment.
This medical center is officially the first thing to ever make me find Arizona enticing!
Please read “The Magic of Believing” by Claude Bristol.
I have eds too ..
I live in Mesa. I just found out that I have 2 family members with hEDS and POTS. I have been dealing with symptoms of both of these since I can remember. I am obese due to many reasons, but one huge factor is fear of being in pain or hurting myself. This fear caused me to not do anything because everything hurt, and it hurt worse when I moved. The best part of gym class for me was the stretching because I could stretch farther than my peers, even being overweight.
My whole life, I would complain to my doctor's about my pain, they just told me to lose weight and everything will be fine. I was put on extremely restrictive diets and never lost any weight.
My nana had to have spine surgery due to this.
I'm so glad to share with you my experience on how I got rid of my EDS with dr imenherbal herbs on UA-cam channel. No more chemo. am completely free. Thanks Doc. ua-cam.com/channels/1PVLGW.html
I have struggled quite a lot with weight gain too, as my medical problems got worse. I went from being very active in soccer, tae kwon do, and horsebackriding to being very sedentary. It's been quite difficult not only to change the way I eat (so hard) but also to lose weight even with restrictive dieting. So, I really feel you.
Thank you..I was recently diagnosed with hEDS, after years of strange and different symptoms, I was looked at by many Doctors as the elephant...my two teenage children do have symptoms, different ones, and I am convinced that they have it as well, but they have not been diagnosed. It's still something quite "new" in Austria....many times each of us has been told it's something psychological....
Thanks for the contribution. I also suffer from the EDS syndrome, along with other diseases (chronic idiopathic pancreatitis, pancreatic duct anomaly, pancreatic insufficiency, pancreatic cyst, gastroparesis, extreme mesenteric artery compression syndrome, heart valve insufficiency, coronary buttock spasms). I have been tube fed for 14 years and oral feeding is no longer possible. A proportion of patients who suffer from EDS also have a comorbidity with a compression syndrome in the intestine (there are various e.g. the mesenteric artery compression syndrome, Dunbar syndrome, nutcracker, May-Turner, etc.). This is shown, among other things, by pain after oral intake of food, some cardiovascular problems, etc. Unfortunately, the knowledge of this correlation/comorbidity is not widespread. There is a scientific paper on it. Unfortunately, since knowledge of this comorbidity is not widespread, I wanted to post the comment/note here, maybe this information will help someone
I'm so glad to share with you my experience on how I got rid of my EDS with dr imenherbal herbs on UA-cam channel. No more chemo. am completely free. Thanks Doc. ua-cam.com/channels/1PVLGW.html
After 20 years of begging for answers I finally found a rheumatologist to suspect eds type 4 and getting genetic testing done. 🙌
Results?! X
Thank you for this presentation! I am getting chills on my joints and my heart is raising more than usual just watching this. I feel so identified but yet there's still a lot of research that needs to be made for the actual treatment of EDS. Every doctor I've seen knows what it is but doesn't know what to do about my symptoms and this is never something any patient wants to hear. I am left to accept my situation and told to be glad I don't have an immediate life threatening issues. However my quality of life is important and we need to keep looking for answers for all of these zebras left to wait out this ride. I feel trapped in my own body at times because I know I am capable of being normal but my body won't let me. Thank you for the information and for spreading awareness. Every step counts.
I'm so glad to share with you my experience on how I got rid of my EDS with dr imenherbal herbs on UA-cam channel. No more chemo. am completely free. Thanks Doc. ua-cam.com/channels/1PVLGW.html
Dr. Saperstein is my doctor. He's really excellent. Although EDS is difficult to treat, the staff at the Center for Complex Neurology follow the science and do their best to help you manage symptoms in a patient-centric, respectful environment. Two thumbs up and a whingy dingy. My highest rating. 🙂
Thanks for sharing your experiences.
Thanks for sharing your experience!!💙
“vEDS is characterized by translucent skin and prominent veins-” looks down at VERY prominent veins in wrist, “-some hEDS patients may have some prominence of their veins and become alarmed but-” *sigh of relief*
I have a very strong suspicion that I have some variety of eds. I really should get it checked out.
I have extremely pale skin with very prominent veins that are visible on my face, legs, arms, chest, back (pretty much everywhere) I am hypermobile and both bruise and scar very easily. I'll also have heart palpitations and feel faint/light headed frequently.
Then I'll convince myself that I'm just being paranoid and never get it looked at.
The part where we convince ourselves that we are just paranoid is the worst part. I’m scared to get a second opinion on my diagnosis of hyper mobility syndrome because I am scared they’ll think I’m a hypochondriac
I have similar symptoms to you and am currently in the process of doctors examining my fainting…I’m going to bring EDS up next time I see my family doctor. Good luck to you on your journey in figuring this out and I hope we both find out soon!
I'm so glad to share with you my experience on how I got rid of my EDS with dr imenherbal herbs on UA-cam channel. No more chemo. am completely free. Thanks Doc. ua-cam.com/channels/1PVLGW.html
We offer diagnostic testing at our Center if you are interested. Just reach out to us via our website where we can chat in a HIPAA-compliant way to discuss more.
I was diagnosed with eds a year ago age 30, it’s now caused me to not be able to carry children thankfully I have two healthy children. Carrying them caused my pelvis and hip to need plates and screws. I also now have arthritis in my spine
I'm so glad to share with you my experience on how I got rid of my EDS with dr imenherbal herbs on UA-cam channel. No more chemo. am completely free. Thanks Doc. ua-cam.com/channels/1PVLGW.html
I have hEDS, we have many in my family with gastrointestine issues, arthritis and asd/adhd. I also have ME/CFS and endomitriosis. My issue is that all the doctors I've been to have dissmissed my symptoms time and time again. I've been in constant pain for as long as I can remember. I have a diagnosis of hEDS from a physiotherapist that does research into EDS and is an expert on the condition. But in my country only licensed medical doctors are allowed to make formal diagnosis. And mine doesn't belive in anything but the common cold. I had to fight my previous doctor to get a referral for my ME, becuase that's not a real illness either.
It's a good thing there are organisations like yours that spread the word in easy to follow and interesting ways. I'm sharing this with everyone I know.
Sorry to hear that you've had such a hard time. Thank you for sharing. We have to keep trying to raise awareness.
Anyone else have pretty much 0 memory??? As in if it isn't a story or in a picture you don't really know????
I have struggled a lot with intermittant memory problems. I'm not sure if it's brain fog or connected to my sleep disorder or the fatigue... but definitely the more tired or fatigued I am, the more affected I am. I have difficult at times with basic math (like calculating a 10% tip for example) or remembering how to go places I've been many times before. It's quite frustrating.
Excellent presentation, perhaps the best one I've seen. The only thing I would amend is the image used for vascular eds is the same person not two different people. In rare cases those with veds can suffer from adipose atrophy whereby the structure of their face is lost.
My son was diagnosed at 6 by having anouther disorder. I didn’t know I had it until he was diagnosed
I have all the symptoms mention here… I just to learn to live with all this
I'm so glad to share with you my experience on how I got rid of my EDS with dr imenherbal herbs on UA-cam channel. No more chemo. am completely free. Thanks Doc. ua-cam.com/channels/1PVLGW.html
Omg I have never had anything explain the pain in my jaw that happens only when I eat some things. I felt it just yesterday when I went to eat a toaster waffle lol. It also happens when I eat with my headphones on. That and a lot of other things lining up explains so much.
My grandma got diagnosed with arthritis at 9 and last we talked she said she wouldn't be surprised if I had arthritis setting in too, even though I'm only 20. But my pain doesn't quite fit arthritis when I consider my whole body and not just my bad knees and hips. The headaches, jaw pain, easy bruising, transparent skin even for a super pale person, joint pain, gastrointestinal pain, and dietary restrictions/allergies that I've had my whole life all kind of line up with EDS, I now realize.
For Fazza. Thanks.
I have hypermobile with my knees and my left knee dislocated alot before and still is and now when i bend it, i can feel a tiny lock inside. Sometimes i fee like my knee is overworked or smth i really have no idea whats going on. Everytime i bend for a squat my knee cracks. And for the skin, ive had eczema since a little kid so maybe that explains all the scarring due to itching.
my sister has bad hypermobile, and I have mildly bad hypermobile but mine has been getting really bad lately
Good luck for you
What about eds with other connective tissue disoreders. Example: both my cooper ligaments have detached. I went for a mammogram for the 1st and the other happened shortly after the mammogram. I have dizzy spells, lost 60lbs from December to April without trying (now having to consume 2500 calories to stay steady). We do not have good Nurologist around my area especially that take my insurance. I've had a lot of surgeries and they say my insides are full of scar tissue, I have bilateral pars defect, hypermobile, leaky heart valves, no memory of anything much besides trauma and conversations and the trauma is in bits and pieces. My life feels like a big puzzle with 168 medical issues that I believe a dr that knows could help put the pieces together...hope everyone gets answers!! I also have mild cerebellar tonsillar ectopia and a bunch of incidental findings that do look as tho they'd help put it all together 🤷🏻♀️ pvc's psv's...I'm medically lost!
Due to HIPAA and for patient privacy, we cannot discuss or provide a diagnosis on this platform. You can contact us via the link below to inquire about scheduling an appointment? On our website, you can email us using the Contact Us form, or you can text us using Klara; a secure method.
complexneurology.com/contact-us/
I just got diagnosed with hyper mobility syndrome, but I feel like it might be a misdiagnosis so I’m getting a second opinion…
I'm so glad to share with you my experience on how I got rid of my EDS with dr imenherbal herbs on UA-cam channel. No more chemo. am completely free. Thanks Doc. ua-cam.com/channels/1PVLGW.html
If you need a second opinion, we offer diagnostic testing at our Center.
Thank you for sharing this info. I was diagnosed with hEDS but I have a feeling I may have classic type. As of now, I have chronic pain, stomach issues, POTS, SFN, migraines, subluxations, etc. Should I expect this condition to worsen? I know many have frequent dislocations so I wonder if I have a mild case or just haven’t graduated to that stage yet? Thank you for any advice you can offer.
I am not a professional, but also have a recent diagnosis of hEDS. I've had some symptoms my entire life, but they didn't really interfere with daily living or would come & go infrequently. The last 3-4 years I've come to have daily symptoms and episodes that last much longer than ever before. I'll be 38 this year. Two seperate doctors have told me it is progressive & will require more management as I age. In research, the only thing I have found may improve is joint laxity due to the natural tightening of joints with age or the progression of arthritis in those joints.
I've learned a lot from my own research. I've found some solace & support in Facebook EDS support groups. You should consider joining.
Everyone is different. Not everyone gets progressively worse. There are treatments that may help, such as physical therapy with someone very knowledgeable about EDS. ~David Saperstein, M.D.
Keeping up with specialists who can check the progression of likely problem areas; ankles, knees, hips, etc,... is a good idea! Also working on strengthening exercises that are EDS approved is a good way to prevent joint damage from becoming problematic later in life. This is from my own understanding of hEDS and it’s the advice I was given, but please double check with a doctor if possible. Best of luck!
I have eds diagnosed at 8 just turned 30 definitely slowed me down some days
@@centerforcomplexneurology Do you see a correlation within your patients, of oxalate issues. Specifically with pots, gastroparesis, hypermobility and veds? Tacking on myasthenia gravis as well.
I think there's a correlation within our connective tissue disorder. Elliott Overton, man I think he's hitting the nail on the head. Thymine B1 deficiency especially in those where their liver over makes oxalates. I'm like a regular stone quarry. My God even with the issues of inflammation such as also the issues of having low-grade fevers and issues with sepsis. I can't believe how it goes hand in hand. You know it's so sad. I have yet to have a single doctor help me with this. I'm so happy I'm finally going to be tested for myasthenia gravis. As well finish off my genetic testing. The dead veins I have all over my body, especially on my left leg. I know I have veds. And unfortunately because I didn't hit the marker for hypermobile which at the time, there was no genetic marker for hypermobility. Although it was brought up in a certain community within oxalate that it may be interlinked within the RCCX Gene. I will never forget that.
I wonder if the oxalates within our muscle fascia, the antibodies that are attacking our muscles. Does our body actually think that's a mechanism to help remove the oxalates from our muscle? And or nerves? Is it a mechanism that is trying to help but it's actually causing a huge hindrance? I think these correlations align strongly. And if you haven't heard of this. Or no of this. You really need to jump down that rabbit hole. Pots gastroparesis certain neurological issues I mean it's 1 + 2 + 3 + 4.
Finally it hit me the other day with me getting so exhausted that my left eye loses its ability to stay open and just wants to shut. I get to the point where I can't hold things. My muscles feel like I have a weight suit on me. I've been seeing and correctly it's not physical pain but it is muscle over exertion feeling. Such as you have a really hard workout. Your muscles hurt. You have that malaise all over your body.
I have been able to pull myself in and out of remission. You know how they say third time is the charm. I say it is the pattern. I'm noticing a correlation within, getting the proper amount of nutrition in me. Sunlight getting tan and making my own D3 and eating good animal nutrients. As soon as it gets cold, it is so difficult. My body doesn't tolerate temperatures very well. Too hot too cold. Not to mention I'm fluctuating between my temperature all the time. I fall into a point where I don't take care of myself that well during the winter time because I'm super exhausted and those symptoms of myasthenia gravis just hit hard. And like clockwork. March and April I start having kidney stone issues. My oxalate dump. I was always told to eat my new amounts of oxalate so my body doesn't have a hard dump. Yet here we are finding out that genetically some of us could be over making our oxalates.
There's a huge correlation within this. Within my ability, to stay on top of my carnivore / very clean keto diet. Yet some of my symptoms that I am having problems with. Also our correlating with the issues within B1 and thiamine. The correlation within making the overabundance of oxalates.
The ability to get in nutrition such as bone broth tryptophan sunlight beef liver. That is a magic moment for my body. Absolutely incredible. Keeping the free MSG low, and all those good fats high. Tryptophan the lightest brightest amino acid out there allowing me to take any available sunlight to make d3. Beef liver K2 and all my other good nutrients. Chicken stock hello tryptophan. Silkie chickens and the black varieties, have the highest amount of tryptophan in them. Actually chickens have higher amount than turkey. It's the available light that triggers your tiredness during the holidays when you're eating turkey. Low lights candles holiday lights. Your body gets tired. It's not that turkey has the most tryptophan. Because chicken has more.
I wonder if there is links with autoimmune conditions as well as the correlation within rheumatoid arthritis and losing one's eyesight as well as the correlation within the connective tissue disorder, myasthenia gravis, leading to the attack on muscles joints our eyes vascular system. I follow up blind woman and I swear to God I think she has ehlers danlos. I think she's a hypermobile. Vascular type as well.
What if our body, is trying to produce something to attack the oxalates which in turn attacks our muscles and or specific vascular and joint issues. Lowering of the immune system, if our cells don't have the proper nutrition, they can't function properly. Genetic mutations added on, the push of veganism. My God. Think of what it does to those of us with oxalate issues. I cringe when I see people drink huge amounts of oxalates. Please check out Elliot Overton's work.
I know that disease follows a pattern, I know all the patterns that I've been going through. I know that connective tissue disorders also are following patterns. Gastroparesis pots.. Beriberi syndrome. The attack of the thyroid. What if these are all interlinked within the body's dysfunction because of lack of nutrients, genetic changes in our body and overproduction of oxalates our body trying to attack this because it is a foreign thing in a foreign place. Only to result in many different issues. And inflammation. And over and over again I see the connection within connective tissue disorder. Hi 25-year herbalist. I work on the other side of medicine. As well, I have learned so much since the age of 10 and the realization that I was right and I nailed it by 28. Gosh did I nail it. Not to mention, I also nailed a lot of issues correlating within the inability to methylate properly. Elliott suggests those that have the overproduction of oxalates within their liver. And personally myself my kidney is malrotated transverse malformed. I'm lucky that it releases urine. So I have SNP Gene ene mutations I can't methylate. Many of my family members cannot. My grandmother is classic, my mother is vascular. My aunt and I are both hypermobile. I guarantee I'm vascular. I've lifted weights and blown veins. Doctors blow my veins. Levido reticularis. Well I have a permanent pattern, that whole area of veins have died. Kind of scary.
Issues within methylation within my family. My poor cousin with epilepsy. My other cousin was schizophrenia. It was like a whole new world whenever I assisted them with their methylation. Although my one cousin was able to remedy his seizures with the ketogenic diet. He's 54 now and he's been off of his medication since he was 19 years old. Having to take over 30 medications. Having epilepsy since he was five, within minutes of his injection for smallpox and polio he started seizing.
There's a huge correlation within our neurological issue and HDL fats. As well as nutrient dense foods. And I'm seeing a correlation within oxalates and EDS methylation vascular problems. As well as our own body attacking ourselves our muscles our organs and our glands. Even issues within our lymphatic system. I'm going to copy this and email this to you. I really want to talk to you and bounce some things off of your expertise. I'm very far away. I wonder and hope you do appointments from far away.
Please please UA-cam that love this comment to go up. This is very important to me. I'm so censored through UA-cam. Much of my information they don't like me sharing. I have a protocol for cirrhosis of the liver and hepatitis. As a matter of fact in most illnesses that I deal with when I treat a person is if they can't methylate. And I flush their body with nutrition, and the most important. Bacteria and animal enzyme. Some of us have lost our ability to produce the proper enzymes to break down our nutrients. I truly feel it correlates also within our oxalate issues. And certain bacteria. And genetic mutations that don't allow us to host such bacteria. Which was pointed out to me at Mayo clinic. 2004.
Not to mention heart palpitations ... P o t s. Our autonomic nervous system parasympathetic. And more. I truly hope I get to converse with you and my goodness wouldn't it be awesome if I could actually meet you one day. I keep hearing and saying to everyone. We need each other more now than we ever have in our own lifetime. No information is bad information. One should never turn another one away, because they assume they're not intelligent as the other. I've educated 18 internist and 14 nutritionist. I can turn bilirubin from 16.9 dementia state to 0.2 considered undetectable. Those that are extremely heavy take two months those that are not one month. I've had one client stretch 3. And they were actually over the 400 pound mark.
Pardon I didn't mean to post. I think there is a large correlation within EDS and all of the issues that I have linked above. Especially with an oxalates myest India gravis the underproduction of our autoimmune system triggers that our body is trying to do to help us that are actually hindering us. The correlation of nutrition. I am shocked at some of the information that I have gathered. Get when I speak of this to any other doctor. They are oblivious. Our medical system is failing us. Severely.
Never heard of it but am certain I have it. 😂
What about podiatrists? Any correlation with plantar fascitis?
Piezo genetic pedal papules are associated with Ehlers Danlos syndrome and would definitely cause problems, I never knew that I had these until last Year when I found this syndrome.
I have cEDS or Classical EDS but I also have Epilepsy, could it be possible that they’re a comorbidity? I found out about my EDS last year in January. I was born with it. I have PCOS, Asthma and Autism. My Neurologist is the one who diagnosed me. I’m going to talk to my Cardiologist on the 17th about getting tested for POTS and Dysautonomia because I’m beginning to show signs of them.
We have sent your question to Dr. Saperstein. Please allow him time to respond.
@@centerforcomplexneurology thank you, I appreciate that. I have known other people who have both also, so this would be helpful to them as well!
How do you get tested for what type you have?
Can you please elaborate on what testing you are referring to so we can answer this question?
Tiffany, you can contact us using this link to set up an appointment to get tested. On our website you can Email us using the Contact Us form, you can Text us using Klara - a secure method, or call us. Due to HIPAA, we cannot discuss more on this platform. bit.ly/LearnMore_CCN
First you need to fit any of the criteria of EDS you can find the assessment criteria on Ehlers Danlos Society site and then you find a geneticist to discuss your criteria and why you believe you have it, they do body observation for criteria, measurements of the hypermobile joints, looking up for certain type of scars, stretch marks, blood work (except if you are suspected of HEDS, which is the only type without genetic markers) and a long conversation with the doctor about your family health history and yours as well, all the exams you made, from cardio, ortho, neuro etc take it always with you. EDS is inherited so this means either your mother or father has to have it, spontaneous mutations are very rare. I took 32 years to be diagnosed... Was a hell of a fight against doctors that told me I was only mental.
@@ChemicalViruS004 hello .May i Ask where should i go first to be correctly diagnosed with EDS.Rheumatologist or Geneticist?Thanks
I was told I have ms being treated for ms,just got told I have Eds and pots ......so can I have both or can eds mimic ms
It is very common for EDS and POTS to mimic MS. However, it is possible to have MS in addition to EDS and POTS. ~David Saperstein, M.D.
@@centerforcomplexneurology thank you for reply,I'm having chemo treatment mavenclad for Ms and 6mths in I've already had steriods due to optic nuritis 😣 I feel like it's never ending I just want to feel normal and have energy
@@TaminasWorld hope you're doing well
No doubt that having EDS makes life more difficult and it definitely causes chronic pain. It can be difficult to separate things out and know what it causing what. Don't forget to experiment on your body with food and vitamins.
Examples: 1) most of my life I blamed all of my joint pain on EDS. In fact, a lot of the pain IS because of EDS - BUT, grains/ gluten add to the pain considerably. Try eliminating wheat from your diet and many will find a lot of relief. When you're living with chronic pain, any relief helps!
2) A lot of GI issues are again, from food. Too much of certain fruits AND again, GRAINS cause GI issues.
3) There are supplements that can help. Silica can take about a month to help but it does help with joint issues.
There are some theories that EDS is a form of malnutrition...possibly from mom when we were in the womb. We probably need much higher quality food (more nutrition) and vitamins.
Don't give up! God bless!
❤️
Is anyone familiar with visceroptosis with EDS?
Just out from Rhemy ,eventhough have every symptom ,but thinks i have an agenda as out of work ....diganoised of Psa and gout on biological and methotrexate, bed bound 6 years, he has decided do not have psa any more ...its fibro ..and joint hypermobily syndrome...not eds as he thinks skin not that stretchy ,no def diagnose with parents,....,my son hypermobile ...anyhow cannot understand why do not recognise it here in southern Ireland