Відео

I had migraine with aura few months back..after that im getting afterimages..and kind of static vision..and few days back got tinnitus in one of my ear When i look down..i feel my head is moving to and fro Is it due to cervical instability

Heds/ hypermobility disorder and other eds types can come from spontaneous gene mutation/ de novo mutation as well. I really believe this is the case for me and potentially many others with no known cause as of yet but could explain it's prevalence. There seems to be no solid evidence dividing hypermobility and heds into different disorders that I've heard of that draws a hard line between the two it only sounds like one is more severe than the other however we already know all eds types sit on a spectrum and no 2 people's symptoms are exactly alike

So glad there is more and more information out there like this for people to find. Hopefully medical community as a whole catches up soon!

Interesting. Thankyou.

I know you are a real doctor and have seen so many speak at seminars and write papers on this, you're all not "fake doctors", but as I talked to a neurologist Dr. Joseph Vaughan, MD, yesterday, he claimed this was all fake internet crap (I said the wrong vein name when explaining the movement of the upper cervical spine can compress some veins), and was clear he was not open to work on, or research. I tried explaining CCI and how cerebral spinal fluid can get stuck and not flow properly and he said it wasn't real. I've struggled with severe pain behind my eyes, have symptoms of IIH, have hEDS, diagnosed POTS in a hospital with a til table, have issues with losing feeling at times in my arms and legs, and this was the first neurologist I've seen in five years, and have been trying to get in to see one for many years, but to see journals covering this and a neurologist to state that no one will even help me with migraines, or RLS, all things I do need help with, i know many won't and cannot help POTS, but since I have issues with POTS and he claims the meds cause headaches (migraines began as a child and have been huge issue well before I was medicated), he refused to help me with any of my issues that I see online he can and does treat, and was brushed off, simply because I have EDS.

Can you please provide the some naes or resources of the doctors on the east coast who treat this surgically please?

D all of the above

I have retinal vein occlusion due to mast cell activation presumably since doctors say we don’t find any clue. I have reaction to seeds and bread and dairy of any type and some veggies with high oxalatr

Dr. Saperstein… I just think of Rosemary’s Baby!

I got unable to move for a few seconds ☠️

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Need something that helps

So I was told for the last 15 years that I had something called fibromyalgia. I just went back to a rheumatologist last week and then I had a check up with my normal doctor yesterday I stopped going because of the way they treated me over the fibromyalgia and now after 30 years of being in pain and 15 years of being diagnosed with something else, they actually think that I have this along with a massive vitamin D deficiency And I can tell you right now that the moment it becomes not just being hyper mobile is when it causes so much pain that you actually wanna kill yourself because that is where I am at and that is where I have been at for the last six months over the last 15 years. It is progressively gone way more painful and I cannot handle it anymore.

I hope you read this. I’ve been diagnosed withSFN. I had late stage Lyme Disease and developed SFN. We bought a Hyperbaric Chamber so i could “get my body back” and not live in horrible pain, stiffness, prickling,and fatigue. I’m here to tell you it, basically, cured me! I was relieved of the debilitating symptoms. I started thinking well, I cured so I stopped using it and the symptoms eventually came back so I went back to 1-1.5 hours/day and, once again, I felt 110% % better.

I’m in the UK & where I live trying to get proper help is like banging my head on a brick wall. I’m well and truly sick of ‘feeling sick’ like rubbish and in a lot of pain. I’d like some quality of life back.

Minimal

What specialist do I see to get tested

I have all but 2 if these… I’ve only ever fainted twice but… should I get this checked out?

I thought my symptoms were due to my Iron Deficiency Anemia and Antiphospholipid syndrome but this might actually be what I have.

Dr. S, I have MCAS and HAT, no EDS or POTS, but a progressive peripheral neuropathy and inflammatory arthritis. Would appreciate any insights you have on this constellation of disorders. Thanks!

l am in the same boat Pain management trying me on this and that always complaining about you taking too much , your meds not getting filled on time suffer with withdrawals , then twisting your words a bout how and when you take it " let them devil 🙏💙Doctors talk to the drug pushers and addicts like that no they baby drug abusers because if they are in the hospital and you dont give them what they want they'll make those emergency room doctors wish they had ! l have seen it !

Thank you for the information. Do you have any other surgeons that you recommend? Thanks.

What about ketoifen? What about heavy metals?

Thank you

Distressing to Severe at least now I know why.

Both are extremely painful

I have two, both relating to bad doctors refusing to do more than bare minimum research. I was told I was “too heavy” to have it. Then when I pressed it, I spoke to multiple doctors about my condition, only for them to shrug it off as weight, my cycle, or just dismiss me after roping every type of the condition into one, rather then recognizing the drastically different distractions. Like… I swear they open Google for two minutes and come back with only AI generated “facts”. The fact that anytime anyone tries to research anything, AI is the very first thing that the likes of Google even shows you. Like, if I didn’t know any better, I would’ve read that and just lived my life without a care, only furthering damage to my body. For context: I’m not even obese, just overweight.

A

You have to live with discomfort and pain for the rest of your life and “Just deal with it!”. Or you are being manage by a doctor and don’t qualify for being seen by this specialist or that one.

Can confirm.

That it is EDS - it’s a lazy description. Ehlers Danlos Syndromes are 13 different types. Lumping them all as EDS confuses everyone as much as just saying I have ‘arthritis’.

You always deliver such great content! For those looking for natural allergy relief, I can’t recommend Planet Ayurveda's Allergy Care Pack enough - it really works

All these years and I have to find out about what I (99% have) through a Facebook post my mom saw describing a woman's terrible journey through getting properly diagnosed. Mom told me that this woman's story was MY story and I needed to look up EDS. I did. I'm sitting here almost in tears because it explains every aspect of my life, minus a few other issues related to another health condition I have). Doctors have consistently failed to properly diagnose me all my dang life and here I am disabled and unable to earn a living, still, in my 40s and I see that there is no financial help for me, even if I did magically get a diagnosis. At least I can finally start finding help online through people's experiences and advice. Maybe I can help make my life a little more comfortable.

I cant......score a 9 out of 9 on The Beighton score.....interesting little fact!

I was just finally formally diagnosed with HSD a few days ago, but im feeling a little uncomfortable with how i was assessed. I was told i only have 1 of the 12 points (heel bumps) but i had 9 years of braces to fix my teeth which i was specifically told was a high and narrow pallet issue, but my doctor said that history doesnt count because he needed to assess with what he could visually see. My skin stretches to the required minimum, my skins so soft it just splits sometimes, i have 3 abdominal hernias but my ultrasound to confirm them is upcoming, ive got symptoms of pelvic floor prolapse but my OBGYN referall is 8 mouths out to confirm. I had the stretch marks prior to puberty but since im in my twenties now they say they cant assume they where there before hand. Many things. I had expected getting the HSD disagosis, but i thought after the hernias and obgyn could weigh in that it coukd be updated to HEDS, but i was told no. I strongly believe a different doctor would have diagnosed me differently or that after those appointments confirmed stuff it would be heds :/ not sure what to do going forward

I had seizures for a year from 3 years old to 4 years old. Had three in that year. All grand mal seizures. When I had my first p.o.t.s episode, I got up to hug my mom. Only to pass out in my mom’s arms as I was standing, and started shaking like a seizure. There where a couple other times after that where I just stood up, passed out and started seizing up. Was wake through it the last two times. It was scary Dx happened in the bathtub for one. The other had me stuck between the toilet and tub while my body was just seizing. Hurt so bad trying to fight everything in my body to keep me up and even try to move me from the spot. Since introducing cannabis. I haven’t had those episodes. Besides my body going heavy and shaking a bit if I’ve pushed myself to hard through out the day.

B

I can

A. I can

I can’t, but my son can. I do have a few tricks, though. I can roll it, turn it over both ways, make a 3 leaf clover & do a few other fun things that nobody else I know can do. 😎

Theres more symptoms than this

How fast can a critical situation requiring Intubation come on when you have Myasthenia Gravis

The list goes on … pain yeh that about covers it

Eds has cuased me kyphoscoliosis and now this monster

Do you happen to know of a good MSAS doctor in Utah?

Can IST arise from autonomic dysfunction, pots or vice versa?

A lot of people don’t understand HSD. Cuz if you “google” hypermobility it just states being “double jointed” or “flexible” But I have been diagnosed with hypermobility in 85% of my body and I can’t even begin to explain the type of health problems and pain it has caused me over the years. Basically none of my limbs stiffened and connected the way the should have as I aged. It’s been hell most days.

They also said there is only one medicine in the world that can help me if you comment back I can send you a picture of the box they sent me the medicine can cause calcium buildup in the eyes and cause blindness and a whole bunch of likely side effects in calcium buildup in the kidneys and other places to and it’s most likely not likely