Sir, do you do virtual consultations? With patients or other practitioners? I am a complex case (apologies for the longer list): I had an undiagnosed and not well understood connective tissue disease that started in the military. Esophageal inflammation and motility/voice/swallowing issues. Progressing for years. But after some catalyst in 2020, despite being super fit and athletic, I began having a significant decline that started with breathing challenges when exercising. Frontal sinus inflammation, inflamed eyelids, and eventually balance and neurological issues. I also began turning more pale and purple, with eventual O2 saturation drops and an eventual POTS diagnosis. And now, I am loosely suggested to have “autoimmune soup,” SFN (despite neg biopsy), and post-infectious syndrome. Some major issues are spine/neck muscle weakening, lack of blood flow to entire body (pale or purple w/ extremely poor capillary refill), atrophy and stiffening of tissue globally, burning spine, burning body, turning more numb and cold. The presumption is Covid or other infection initiated a bizarre inflammatory cascade. And then my many different tissues began to get hit. *Note: I don’t have EDS genes but I rapidly developed joint stability and strength issues. Sorry for the longer post. If you are able to consult, I am glad to pay any price for such input. The VA physicians either gaslights me or tells me I’m terminal and they can’t help. Thank you 🙏

Is there any benefit to having an actual diagnosis of HSD or EDS? I have been having health issues for years & haven't been able to resolve any of them. I saw a new PCP at the beginning of this year & they said they suspect I have a CT disorder but it is extremely hard to diagnose. Would having the official diagnosis make any difference?

..and what if you don't know your family history? Being adopted and seeking medical help is even harder because " I don't know" to that question are treated as a "NO" and they close the case if the criteria includes "family history" ..and there's nothing wrong with U.. 👀🤷🏽‍♀️

No mention of autism in 80percent

I now diagnosed heds autism adhd fybromyalgia symptoms now worst symptom its knowing whats causing what last neurologist says i have migraines in the body no headache daiku

You mention mild demyelination in heds do you mean brain or joints as brain would be ms

This is one of the most helpful videos I've seen on this subject. If I lived in Arizona I would most definitely come see you. Thank you!

I wish there were more discussions about the other types of dysautonomia. I have bradycardia. I’m not suffering from too fast of a HR. That’s all anyone talks about.

I have small fiber neuropathy and my physician only did a regular blood sugar. Should i have a glucose tolerance test as well?

Just found out today I have chiari today haven’t found out what type yet

A lot of these symptoms overlap with Multiple System Atrophy (MSA) so I’m having a hard time trying to distinguish which one could possibly be affecting me. After the extreme CFS/ME like fatigue I am experiencing, I am starting to think the worst.

I have pots and how do I get tested

No difference in upright & horizontal MRI??? Look at mine & try to feed me that bull. Grabb-Oakes of 11mm that doesn't show up on supine MRI. Just to start. Doctors like you are the reason I have spent 16 years in constant, unrelenting pain🤬- Thank God there are a handful out there who actually care.

Yhaks for sympathy do you think a Nerudoctor can help or eye doctor

hello doctor i did a test on myself because I think have pots I took my heart rate laying down it was 72bpm and took it standing up 118bpm is that enough for me to go to a cardiologist

I had stroke and most problem is right side double vision quality of life effected the rest i deal with

Pretty sure I have eds how is it treated

Thank you for this. My identical twin sister was diagnosed before me and scored 6/7 pm the beighton scale and scored 7/12 for criterion 2 part a. I scored 7/9 on Beighton scale and 6/12 for criterion 2 part a. So although we are identical and pass independently of each other we still score slightly differently. X

Since you guys don't take insurance, my plan (after I win the lottery) is booking an appointment the same day!

I'm curious if, since Antihistamines don't actually "destroy" histamine, that if you take H1/H2 antihistamines, would that mean that the histamine in your body would overrun H3 and H4, and perhaps produce INCREASED sympathetic/parasympathetic neurological symptoms?

Hey, I really appreciate your videos, but as an autistic woman, I find background music to be extremely distracting and irritating. Of course, it's everywhere, not just your content but since you specialize in neurology, you should know how this can affect us. Thanks.

my doctor said i have EDS but it’s so mild that she didn’t wanna label it for insurance labels so idk why she didn’t just label it as HSD? like it doesn’t make sense 😭

Agree that you guys are providing an important service! There's not a person on this Earth who I've agreed with everything I've ever heard them say, unless of course I've only heard them say one good thing I guess, but I wouldn't base my whole opinion of anything on hearing one data point so, that's neither here nor there. But this was really good for both sides! Big thumbs up over all🎉🎉❤

The DMX radiology is the only test to diagnose ligaments injury, laxivity which causes abnormal bones movements, it is a must done by the DMx expert !!!! It is proven by lawyers who handle those high speed and violent auto crashes in which a person often is whipped back and forth sustaining ligaments damage, tears & stretching. Like a rubber band the badly damaged ligaments do not heal fully. Thus permanent damage !

Yes there is so much confusion and distortion on the CCI dx, because MDs fail to address ligaments laxivity, often caused by a severe whiplash or injury that cuased torn ligaments. There is true variables in the ligaments damage. It may be injuries in early age, that go unaddressed for long periods then show up later age and become very severe !!! When the MDs, Neuro's, Ortho's dont have enough knowledge they also do harm and put a patient thru tx's that cause more harm. I learned all of this the hard way. Its a tremendous disservice to both patients and MDs to play the turf war game and claim Chiro's are quacks. Instead like all fields recognize there are good, bad, and incompetent. Those who embrace for example the Upper Cervical highly specialized trained Chiro's really begin to practice genuine medical CARE ! Forget the fraud & bias taught in med schools that push business money making not patient centered medical do no harm care !!!

I went into crasis for over three years i was struggling with mutiple of symptoms. As i speak I'm yet to be diagnosed. I had to check on Google to know what is wrong with me. It's only by the grace of God I'm still alive.

I was taking basically all the OTC anti histamines on the market everyday (1 of each active ingredient which was 5 or 6) which worked well for a few months but I think I became tolerant to them :-(

i have electric shocks through my entire legs and arms after vaccine, would this eventually go away if it’s just an immune response?

Very informative, too bad you guys don’t take your insurance.

I don’t pass the beighton test because my joint hypermobility is mostly in my shoulders, neck, back and elbows. I meet the second and third criteria for hEDS (I also have a lot of the comorbidities of HSD/hEDS). I recently saw my rheumatologist for a HSD/hEDS assessment and he said yep you’re definitely hypermobile but you don’t have hEDS because you don’t pass the beighton test. But I’m a bit confused because I thought the first criteria was having generalised hypermobility and the beighton test was just the most common screening test for hypermobility?

Thank you so much. I have been struggling with debilitating headaches since a TBI sustained in a skiing accident when I was 12. It has often been debilitating and I have sought help again and again. It’s incredibly disheartening when your brain hurts constantly and it seems like no one is taking it seriously, or worse, insinuating that you are exaggerating the severity of what’s happening. I’m 37 now and I found out two days ago that there is a Chiari malformation in brain after having imaging done. I was diagnosed with TN, TMJ disorder, and migraines prior and it just feels like the headaches and neck pain keep stealing my life and the things I have worked for. It sucks. I don’t feel relieved, just desperate for help.

I'm in Alabama. I need help. My condition is getting worse, much worse in fact. I've been to 3 neurologist and haven't had any real relief.

I had my own genetic testing done via Invitae and the most common subtype, the hEDS, is the only one they don’t have a genetic test for yet, unless something new has happened…

I have hyperadrenergic POTS. My neurologist at the Mayo Clinic put me on Propranolol and it has changed my life!

was told Intravenous IV-IG can reduce Small Fiber Neuropathy via regular Intravenous administration. Recently I was introduced to a oral capsules by METACURE. The Revive Alpha Lipoic Complex with Curcumin is much faster than Intravenous IV-IG and ALA. The SEVERE NERVE PAIN, TINGLING AND BURNING are reduced about 90% to 100% in one to two weeks. The NUMBNESS is slowly going down though takes much longer.

I have POTS and documented electro clinical EEG-confirmed focal aware seizures in left temporal lobe. Everyday I have seizures, triggered mostly by sleep transitions.

I have double vision for about a year now with no other symptoms of MG. My doctor has prescribed 'Gravitor' 60mg thrice daily. No change in my status... is it normal. How

Thank you for such a complete and easy to understand coverage of MG. I was diagnosed in my 20s, but probably had it before then (looking back). The diagnosis was 35+ years ago and because I was seronegative, my neurologists have been hesitant to do much more than pyridostigmine or neostigmine. The main question is always: do we treat for antibodies? Then, 20 years ago I developed CRPS. It's difficult to find anyone who will treat both, but I was successful, at least temporarily. After this very brave and knowledgeable anesthesiologist as a Pain Management doctor, and CRPS pioneer, she retired leaving me to retired life that has been tortuous. The new Pain Dr. refuses to go very far to treat pain, so the stress from the pain triggers MG symptoms. That means the Pain Dr wants to push me over to my neurologist who has not been treating CRPS. Your discussion will be useful in bringing the specialists together. Thank you again for making things so clear and accessible.

Do you know of anyone in the Nashville or Middle Tennessee area that could help with a diagnosis? I have so many symptoms but none of my current doctors know enough about hEDS or HSD.

why is this info everywhere but in the hands of the doctors in my area. to quote my rheumatologist "I cant diagnose EDS here, No doctor near here can. Its Fibromyalgia. We need to get you on cymbalta, Its the only thing i can help you with." She didnt even offer to refer me to anyone else, just said they were too far away and then that was it. after offering to put me on a pill that may or may not work for me, telling me to go to my pcp and ask for a diabetic shot ozempic to help loose some weight (even though i worked so hard to get my prediabetic numbers down. Im not even prediabetic anymore, just fat) and refusing to answer any questions about anything further she left the room stating that i could call back if i changed my mind about the cymbalta. thats the second rheumatologist ive been to here and had a very similar experience with the other one too. my pcp didnt offer any other referrals. at least this video gives me an idea of who to ask for. Thank you

TL;DR 😅 Can anyone point me in the right direction, please? 🌸🙏🏻🌸 I live in a small border town in TX, USA. 28-year-old single mother, part-time student in college (4.0 GPA and proud, but losing a little sanity this 2nd year) - in dire need of assistance. ☠️ I highly suspect I have EDS for many reasons. Translucent/elastic/velvety soft skin, visible blood vessels, easy bruising (not anemic; labs came back normal my whole life), dislocated joints (shoulder/ribs), hypermobility as a child (no splits, but I could touch hands flat to the floor without bending my knees, reach well past my feet while sitting, etc.). I still have slight hyperextension with my elbows/knees, can overlap my hands behind my back, make pray hands behind my back, etc.. I've needed to get all my teeth extracted, too - so can cross premature tooth loss with pEDS off the list. Been toothless since 2017 since losing dental insurance/not having the financial means for a surgery needed to smooth things out after the extractions. I researched pEDS, and the photos of those teeth/gums looked precisely like mine did. My dentist, as an adult (aged 20-21), told me that I developed Generalized Aggressive Periodontitis (sudden onset) - and I had no idea that pEDS, having loose adult teeth, etc. linked with that (could feel them move in my gums since they grew in). It took forever for me to get my adult teeth, and even when I did get them, I still had some missing. Chronically inflamed gums made brushing and flossing an unpleasant experience for me - and all this was worth bringing up to my dentist. Never thought it wasn't normal, so I didn't advocate for myself. Oh, well. What's done is done, haha! 🤣👌🏻 I've been diagnosed with PCOS, IBS, and more since childhood. Was told I had a heart murmur only for it to disappear - same thing with my peptic ulcers. Many doctors either were baffled by my symptoms or straight up didn't believe me; I think it boils down to lack of knowledge on their part and proper communication on mine. Denied disability twice, taken off Medicaid a year or so ago, just on Healthy Texas Women now (which only covers women's annual, papsmears, STD screenings, birth control, pregnancy tests, etc.). 😅 I've done tests at home to see if I meet the diagnostic criteria for POTS (30+ BPM from laying down flat to standing, monitored for 2-10 minutes). My resting rate is anywhere from 50-90 bpm, whereas - within seconds to a minute upon standing - it rises to 95+ (if starting with 50-60 bpm) to 155+ bpm (starting from any bpm). That's over 30+ bpm difference each time with an average of around 40-60+ bpm increase. Still, I've broken 160+ a couple times before (from 80-90 bpm resting). I've been dismissed by my local ER and walk-in clinics far too many times. It doesn't help that my POTS symptoms can come and go; they're kinda episodic. Heat can make it worse, as does when I forget to eat or drink water for too long (neurodivergent challenges). Honestly, I've begun to lose a hope for this place I live in. I suspect I'll need to travel for the care I need (if/when I can afford to pay for it). I'm unemployed besides the little writing I do online (Medium blog). I don't make much, sadly. /tangent Anyways, back to EDS & POTS - I strongly suspect I have both, and idk what to do. I've used a BP cuff as well as different pulse oximeters to test at home. My average bpm is around 60-80 resting to 120-140 standing, and this has continued for over a year now, some episodes lasting weeks to months at a time. It can be debilitating. Due to a physical trauma 5 years ago, I also have facet arthropathy & a herniated disc in my lower lumbar spine, sciatica. I now need a shower chair and cane. 😅 I study Ayurveda Wellness, and I piece the knowledge of that with modern medical science in this major. I research for the sake of my own health as well as just for fun. 🎉 There's only so much I can fit into a single comment. I'll leave it at this, and hopefully someone who is knowledgeable/experienced can point me in the right direction. Where can I go for help? Who can I call? Are there any resources I can utilize here in Texas, any outreach programs I can contact? Any assistance would be much appreciated! 🌸🙏🏻🌸

The mistreatment is getting to me

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Damn.

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❤❤❤ Thank you!!! Its so strange to be a normal person who happens to be ill and then watch unfold a series of mistrust, psychiatric referral, gas lighting, bullying, abandonment, rejection and all out weirdness, drastically reducing my chance to receive unbiased care. It’s abuse and sexism. Please keep sharing!!!❤🎉