Yes I also started with ToG, I admit at first it was a bit confusing with this whole giant world you know nothing about, and not understanding how the main character got in that situation but I’m glad I started with it also 💕

Thank you for this! It's something I definitely need to look into, I think, though my symptoms are by NO MEANS nearly as severe as yours at all - which might also be why I haven't been diagnosed 🤔 Do you know about Jeannie Di Bon at all? She's founded something called The Zebra Club for folks with EDS, and has a BUNCH of really great videos both explaining the mechanics behind their issues and giving gentle movements and exercises to try to help increase stability and teach them proper movement patterns (from a foundation of Pilates, I believe) - so many hypermobile folks rely on muscles in their neck for stability when their shoulders and lumbar spine are unstable, for example, so they need to learn how things should feel when in proper alignment and properly recruiting the correct muscles so they can be more aware when they're doing that and work to improve so the pain and tension can be lessened. ANYWAY, I wanted to recommend her video she recently did as a live about The Hypermobile Neck after a recent study came out about neck instability with EDS, because I've found the gentle exercises both really revealing for me, as well as very helpful: kzbin.infoe60ljjIAksg?si=ZizMPW_zSSL9iRca (she DOES say folks who are more sensitive in their neck really should work one-on-one with someone, so those might not be suitable for you, but I thought you might find the first 20-25 minutes when she talks about the paper and the mechanics interesting, as well as maybe just watching the exercises she gives could inspire a discussion with your care team)

I have also had terrible experiences in the medical system and have been gaslit and talked down to condescendingly.... so I know your struggle. You are not alone in your medical trauma, and thank you for sharing because it does help raise awareness.

Do you have EDS?

Jones Kimberly Brown Paul Wilson Sharon

Thompson Susan Lee Ruth Harris Kimberly

Acupuncture therapy help for pain, instead steroids shot on C-7 every 2-3 months? Wish You all The Health Best / Thanks🙌

I rejoice with you🎉🎉

Thomas Mark Davis Angela Lopez Mary

Hi, i hope you're well. Did you also have trigeminal neuralgia?

The only place to shout for joy and someone listen!!! MALS diagnosis at 58! Mystery solved! Thanks for caring and listening!🎉

I so appreciate your story! So many years and finally I was diagnosed at 58! The mystery is solved!🎉 I had a lot of those symptoms! Get well!

Did you ever consider...yoga?

When a 'doctor' uses technology like MRI to 'diagnose' you...that is how you know they are a quack. Real doctors and physicians are able to observe the physical body and make assessments with no tech required.

THE worst thing you can do is wear that brace on your neck...that only contributes to all the symptoms, and whatever 'doctor' told you to do that needs to be fired...If you are looking for help from the mainstream insurance-covered system, you will only find scam after scam.

Good to see you shine bright! You deserve the chance to shine bright like a diamond 💎!!!

Are you saying you have asthma And POTS?

Me too!!! got sick after H P V needle. bedridden and severe illness going on 5 years now

Hi! I'm relating so much to your story. Thank you so much for sharing it!

This is an excellent video! Thanks so much for sharing! I can relate to a lot of this from my EDS journey, and I'm so thankful that they diagnosed yours early in life. Although there won't be a "cure" per se, due to being unable to replace the defective collagen in the body, more and more discoveries are being made through which the various symptoms and comorbidities of EDS can be managed and mitigated better. There's always reason to have hope!

Reporting that nurse would've been good, because that situation was potentially a malpractice or medical negligence situation. That clinic needs to know that the nurse was outside her scope of practice by telling you that wasn't an asthma attack, when it actually was an asthma attack. My daughter had similar health issues, and I would accompany her on doctor visits to help advocate for her. I highly recommend people have an advocate to accompany them during their medical appointments. A family member who spends a lot of time with you in your daily life is also very helpful, since they can provide information and first-hand witness accounts of your medical issues that you might forget to tell the doctor.

Beta blockers were no good for me, either. They can help certain people with their POTS, but not all. There's a wide array of POTS medications, and it all comes down to a patient and doctor working with each other to find which medication or medication addresses the individual patient best. Ivabradine is often used in patients who can't tolerate beta blockers. Guanfacine/Clonidine helped me most, since I have hyperadrenergic POTS and this type of medication prevents adrenal surges and calms the sympathetic nervous system (fight or flight response). There are several other medication types that can treat POTS as well. Definitely don't give up if the first one or two doesn't work! Wearing compression calf sleeves like the marathon runners wear can help a bit. Saline infusions during the hot months of the year can help some people, but not all - this is another thing that needs to be discussed with a person's doctor.

Your story sounds a lot like my Ehlers Danlos syndrome (EDS) journey. For quite some time, I had been misdiagnosed as having Fibromyalgia, but my EDS diagnosis replaced the Fibromyalgia diagnosis. EDS is a differential diagnosis that disqualified me for having a Fibromyalgia diagnosis, due to the specific diagnostic criteria of Fibromyalgia. After decades of doctors often not taking me seriously, the EDS diagnosis finally got me taken more serious and grated me access to much better overall healthcare.

Ps. Wonder if it was also ME/cfs and MCAS? X

Hey Mel I hope you’re doing okay? I was in hospital again on TPN for the 3rd time was on it last one was 9 months home now internet was bad in my hospital so wasn’t able to get online missed your content! Love & solidarity thank you for your video love Jo from The UK been ages since I last tuned in xx

I have cci. Chiari (decompressed) and eds. Just wondering what helped you the most? My neck is a mess and i have severe stomach issues.

Hi just wondering how you are going now?

Thx for this lovely informational video I know it wasn't easy!!! I too experience same here w/docs in US. I'm wondering what we need to look like or what to say much less $ spend before taking seriously? I'm 52 been very ill since Covid 2020. ME/CFS long covid (which is many illnesses imo) so I moved in w/my parents last winter for 5 months eating well, rest on 1 level floor and I began to slowly make progress. Then I unfortunately got covid again February 2024 (acute flu symptoms not bad) I then moved back home 2 months after that & I've just gone downhill. I'm now in bed most of the day, by myself hardly able to do anything much less take care of myself. I'm worried about the future especially being alone in this. It's too much for anyone to understand even my family says go for a walk! Very difficult but I'm sure many understand. So I saw a neurologist last week who scheduled brain, cervical & lumbar mri tomorrow. Ruling out MS is what he wrote. My necks been progressively getting worse I'd say past 8-12 months & im constantly using a travel neck pillow. Eventually i learn about your diagnosis. So on my own advocating for myself completely. My GP sends me to psychiatric center every time... it's awful!!! I'm praying to find answers soon bc I can't live like this much longer. I hope your doing well & Prayers to you, God bless🙏🙏🙏 Kim 🫶

I have CCI and I would love to know your story.

Thank you for sharing your story sweet girl! And for prayers for your viewers! Valuable information for those of us wondering if this is what’s going on with us too 💕

Hang in there Mel, sweetheart. My 21 year-old has all your symptoms as well as the seizures, muscle twisting/flailing. I'm proud of you for staying strong.

Can I ask what was the formula you used that didn’t have high fructose corn syrup?

Thank you for sharing your story! As someone who is in the process of being diagnosed with POTS as well, this helped a lot.

Can i ask your thoughts on primal trust? Do you think its a better option

Love this ❤❤

I love your dress!! Where did you get it from? 😊

You articulated everything so well, thank you for this video and wishing you all the best!

I have a similar story from being a super athletic kid to suddenly sick as a teen x

Story of my life. I'm currently looking to get my diagnosis at 34 yrs old. I spent my entire life in pain, all over body pain, nauseous, allergies, and so much more. I work myself so hard then I'm down for a day . Anxiety is high , top that off with audhd symptoms I'm just a genetic masterpiece 😊

Have you ever gone to an atlas orthogonal chiropractic

This brings me so much joy knowing you were well enough to experience something so taken for granted. I’m so thrilled for your healing story! ❤️‍🩹

I feel like ketotifen helped me a lot. Are you still on it?

Hi. Just watch your video. Sounds like what A spine surgeon. Told me last year. A illyaughed at me. Amd said nothing was wrong g with Y neck or back amd said I was getting old and I am having I flare from my spinal arthritis and fibromyalgia pain. A year later I have still ongoing back and neck problems. And now have a pinched nerve that I worse. Compress Gerri raw. On top of other stuff. Going to get a spinal injection in a few days.

Thank u I'm so going through this it's like you are invisible to them

Is your heart rate increase in pots After meals

Its so interesting how EDS transformed from a genetic condition to an acquired condition...

You are doing humanity a service... I am a doctor, learning from you!!! So serve as a better doctor for my future patients. No one can thank you enough and you don't know how many lives you are saving via this.

Hey mel just curious... did prolotherapy work for you? And did you get posterior injections or the picl? Also did you do dextrose, prp, or stem?

I would like to connect with you. I have EDS and neck instability. Thank you for your videos!

Oh help me!!! hEDS, POTS, MCAS, Chiari 1 and cervical instability.