What’s MCAS?

Mast Cell Activation Syndrome

Same thing happened with me. Thank Zeus for the internet.

I am in the process of trying to get a geneticist to confirm. The problem is doctors have shrugged their shoulders for 15+ years already and a private doctor took my money and ran…I’ve heard nothing from them in weeks when they were meant to write referral letters. The appointment cost as much as my rent!

My Neurologist was the one who diagnosed me with EDS, Classical type. I doubt my PCP would have a clue what it is. I’m also Epileptic and every time I go to my GP he’s always asking me if I had a seizure no matter what is going on with me. My Epilepsy isn’t a symptom of my EDS( that I am aware of).

I know how you feel , you have sympathy. I am 58 and totally disabled and cant work. I will pray for you both.

If u need some one to talk I'm here I know how lonely this can be

Hugely hugs of strength to You and Your Wife through all of these trials may you find much comfort and community of support network for advice and encouragement.

Disappointed?!!! I'm angry as no one came close to any sort of even desire to work out what was wrong with me! I knew I had hyperlaxity since years and explained this to innumerable doctors and therapists who ignored me and went on to hurt me... badly. F them all!

YES. Barefoot or Xero shoes changed my life and constant knee pain (at least while walking). I still have knee braces, etc but being in full contact with the floor also HUGELY improved my propreoception. I was hitting my head all the time (small brain bleeds even from head slams repeatedly into the roof of the inside of the refrigerator, etc! Now I haven’t hit my head in a long time. I still run into doors, etc but being fully in contact with the floor has improved my gate, my spinal alignment, my sense of balance, my sense of where I am in space. Not perfect but way better🎉

Yes! My 9-year-old refuses all shoes and most definitely his orthotics!

That's awful. My son was just diagnosed with autism and ADHD. I can't imagine him suffering with chronic pain as well. Does this video mention that ASD, ADHD, and EDS are linked?

@@RaquelSantos-hj1mq No, EDS has nothing to do with it, but it can nevertheless also occur.

Another youtuber did a survey and a large number of people with EDS are also on the autism spectrum.

I'm 33 and my pain exhaustion and digestive issues dizziness and near fainting and a few other things like allergic reactions have been chalked up to anxiety and depression and me not exercising enough when I can feel my joints and bones sliding around. My only choices are to live in pain without treatment of any kind or even reconition of what's actually wrong or try to get treatment and have doctors try and force anxiety and depression meds on me which do more harm than good or die.

@@crystald3655 Not really there is no genetic connection.

We’ve found EDS runs in my family and my mother before knowing this and getting diagnosed had previously been diagnosed with fibromyalgia, hyper mobility and asthma too

Yes and much more.

@@jefferyashmore6477 like what?

@@sharonjohannaelschot1685 yes to all above and tachycardia, problems regulating temptress. Testing of muscles and joints nerve entrapment, hives from bee stings multiple allergies causing hives.

27m here. Same!!!! So many little things I’ve done began to add up. Unbelievable

Lol saaaame! I heard that and was like 😮

I was just diagnosed, 1 week before my 42nd birthday 🎂 I hope you’re doing well ♥️

@@Rain_Reign wow already 2 years. Doing OK, was also diagnosed with psoriatic arthritis. And then Autism this year. Last 3 years has been a ride

Absolutely- all the time. The most overwhelming thing for me is dealing with doctors, who need to be educated better about our disorder. This video makes it sound like its so easy to find a Primary Care Physician who will listen, and that is just not the case. Some will discriminate against us and say they have no room for us in their practice (in order to not have to deal with EDS), others will make up crap, and I have had none that actually LISTEN. Plus there is a 6 month wait just to see primary care physicians in the major city that I live in (Austin), and the medical practice I belong to won't make sooner appointments for you if you have a "chronic condition." I feel like it is wasting time to put the onus on us individuals who have EDS when it is our society and especially doctors who need to be given the 'list of things to do.' Doctors know we have a lower standard of living, and they don't feel that we are worth living.

Yes, I get overwhelmed

​@@whalewoman813feel just the same

How did you get diagnosed at 47? I'm 47 now and was diagnosed with "loose joints" at 5 after I stopped walking briefly. I have had so many issues that seemed not to connect over the years, it's finally making sense.

@@heatherjoyce-stevens8653 my parents did follow up with doctors. They thought it was growing pains and I would grow out of it. But it only has gotten worse. I apparently have seen a lot of stupid doctors over the years. I've seen 6 differrent neurologist, 7 family doctors, 1 holistic ND, 1 asshole of a 2 pain doctors and 2 geneticist to finally get diagnosed just last month. I'm not as flexible as an adult as I was as a kid, but still very flexible.

omg, thats my story, doctors just assume your pain med shopping, im tired of feeling embarressed to ask for pain meds. Ive tried to get off with some success but there are days i just cant do without a strong pain med. Im looking forward to not being made to feel like a drug addict. i feel you honey

Yes, gaslighting and refusing to believe has been my experience too. I did my own research

I am in the process of getting diagnosed but it’s pretty clear it’s h-EDS. I absolutely understand how you are feeling.

I feel the exact same way

NHS UK 😂 insists it's fibromyalgia. It's obviously not but no one listens.

You will have better days, I promise. I suggest making a life that is easy to manage and sustainable. This will relieve so much stress

Feeling exactly the same. Add in no money, below standard healthcare and you can see where the despair comes from. Sitting here now in the UK it's freezing winter night and I can honestly say I've never felt so low. I feel like I'm letting down my little dog because I can't give him the attention he deserves and no amount of positive thinking will make this better, a lotto win might but I don't see that happening.

I was diagnosed in the Navy in 1989, and SHOULD have been receiving benifts and

I have the same thing occasionally. It hurts so much when I breathe! I saw a Chiropractor it helped. Hope you have relief.

@@badeds100 That was a year and a half ago, and thankfully once it was back in, it (as of yet) has never come back out. Every once in a while it gets to where it feels like it wants to come out, but thus far it hasn't yet.

ive done this all my life. why do we do this? does anyone know? its always puzzled my friends and family. but i dont even realise i do it. they always let me know my clothes are inside out.

@@totabo6aa it s stiching of the clothes, inside the clothes that irritate the skins, at least for me it s that.

@@totabo6aa Labels inside clothes are super scratchy! And so are the seams at the front of socks...I could go on but it seems that you instinctively solved the problem of annoying stitching and labels!

This is so bad. I also have problems, because I am slower than average people.

Any doctor who can diagnose a disease has the power to diagnose EDS if they choose (for more look at ehlers-danlos.com/eds-diagnostics). However, most people wind up at a geneticist's office because EDS can be inherited, and geneticists are most adept at distinguishing among various genetic disorders as well as in doing any genetic testing necessary. Diagnosis starts with a physical examination. An exam for diagnosis of an Ehlers-Danlos syndrome (EDS) or hypermobility spectrum disorder (HSD) probably will include testing skin for what it feels like, how much it stretches; the Beighton Score ehlers-danlos.com/assessing-joint-hypermobility/; taking a look at one's medical history to figure out what EDS symptoms may shown in the past and whether EDS was inherited (which helps diagnosis). It might also include an echocardiogram if heart or vascular issues are suspected, or other tests depending on the symptoms and doctor. Diagnosis of type comes by finding the EDS type that most matches one’s symptoms. The process is relatively straightforward. Match your signs and symptoms to the major and minor criteria, and identify the type that is the most complete fit. For all but hypermobile EDS (hEDS), a provisional EDS diagnosis can be made from clinical symptoms; a confirmed diagnosis calls for genetic testing. hEDS doesn’t have an identified cause yet, so diagnosis remains completely based in matching the criteria, as do the hypermobility spectrum disorders (HSD).

There was a study done at MUSC in Charleston, Dr Norris has completed it, now it’s in peer review. Excited they are expanding knowledge sand easier diagnosis Thru gene testing 👍🏼

Do contact our dedicated helpline team who can advise on this and addressing this with your doctors in the most effective way: www.ehlers-danlos.com/eds-helpline/

I have heds and mast cell like you been operated on all my limbs and need more operations plus I have tore muscles forever. They called growing pains as a kid, I would cry and still do from pain. Took Tylenol 3 and vicodin as needed for 30 to keep working and destroyed myself. Never got hooked on anything because only took when couldn't take it anymore. They shut me off vicodin for extreme break through pain and cut down on Tylenol 3. I was at point of suicide when finally got diagnosed then they gave me more Tylenol 3. I am 58 live in pain daily, I am disabled.y prayers for you, you are not alone.

I wrote this as a response to someone above, and I am repeating it here because I agree with you and I'm so sorry you're having to deal with this. The most overwhelming thing for me is dealing with doctors, who need to be educated better about our disorder. This video makes it sound like its so easy to find a Primary Care Physician who will listen, and that is just not the case. Some will discriminate against us and say they have no room for us in their practice (in order to not have to deal with EDS), others will make up crap, and I have had none that actually LISTEN. Plus there is a 6 month wait just to see primary care physicians in the major city that I live in (Austin), and the medical practice I belong to won't make sooner appointments for you if you have a "chronic condition." I feel like it is wasting time to put the onus on us individuals who have EDS when it is our society and especially doctors who need to be given the 'list of things to do.' Doctors know we have a lower standard of living, and they don't feel that we are worth living.

Cassy Kellogg hmm, sounds like your child’s doctor may be confused. The long arm span she’s talking about makes me think she’s referring to Marfan Syndrome. It is pretty similar to EDS in many aspects, however, it is still a different disease much like Loeys-Dietz Syndrome. Did the doctor use the Beighton Scale as part of the assessment? I would talk to him/her more about it or find a different one if your not satisfied. I’m still surprised at how many people in the medical profession are unaware of its existence, but at the same time it is a rare disease. Good luck 👍🏼

@@jesseballard5741 Yes, Marfan is connected with lenght, but EDS isn't. There are many short people who have EDS.

Second opinion

Marfanoid Habitus is probably what they're reffering to. It's not a requirement to be diagnosed with EDS, just some people with EDS happen to have it and some types, like the musculocontractural type, are more likely to have it.

I also had a clueless doctor like that who screened me for Marfan instead of EDS, which delayed my EDS diagnosis by 17 years. Get a second opinion, and bring the actual diagnostic criteria with you: www.ehlers-danlos.com/heds-diagnostic-checklist/

From where was she diagnosed?

I am in Pakistan, have EDS, muscle relexant tablet Neubrol has helped me a bit. Taking omega 3, and vitamin C has also been useful. Most of the time you have to research yourself as doctors here know little about this. A good pain management doctor can also offer some assistance

please reach out to our helpline! They can provide support and resources that may help you. www.ehlers-danlos.com/eds-helpline/

I don’t think there is a lack of dietary collagen. It is the body’s inability to assimilate the available collagen in our diet. The body is unable to use the raw materials to build strong connective tissue.

Please reach out to our helpline for information and support! www.ehlers-danlos.com/eds-helpline/

Geneticist who specialises in EDS. If youre uk based reply and I'll provide a contact number.

Ikr! XD

Haha I’ve had children comment on how i “look like a teenager”. I’m 35. And my mom who’s in her 60’s still looks at least 20 years younger than she is.

Hi Juhaa, do contact our helpline team who will be able to offer their advice and support: www.ehlers-danlos.com/eds-helpline/

Stop doing it. I can do it too, did not hurt when I was young, but now I’m paying with pain daily. Do not go crazy doing yoga and Pilates just because you will be super flexible to do amazing yoga poses. Those will open up your spine to problems. I’m fused in two places and still rate 7 on Beighton score. Now all the other joints are painful.

@@beelady8101 I am same way scored 9 on scale, lots of operations and muscle tears. My heart goes out to you. You are in my prayers. 18 operations need 3 more. 30 years pain killers trying to work I am now disabled. Life is very hard.

I live in Ontario Canada

I'm going to go to the GP with the diagnostic criteria printed from the eds website maybe that would be an option?

@Leanne Schnerch Did you get your diagnosis in time? Did you share your story of the ups and downs you experienced? All our diagnosis stories are so crazy. They are filled with the stupidity in the entire medical system. Examples I recall: Upon meeting my first rheumatologist, he read my entire 10 page "story" of how I became bedridden. I was left there with the intern whole he went to his office to read it (and possibly Google symptoms?) He raced back into the room and tried to ram my thumb to my arm. Wow, was that confusing 🤯 I'm having sleep disorders, pain, seizures,++++etc. Why is this dude trying to break my thumb!? He never told me. He just said "Fibromyalgia." 7 years later I found EDS and discovered the angle at which my thumb touched my arm and was shocked. I ran back to him to show him. He brought in every intern. They had me twist and pretzel things all over my body. No one spoke in english. There were just a lot of oooh, and ahhhhhs. Then he stands back and pronounces that "You do not have EDS." I'm like, ummmm, why? He said only circus performers who can stretch their neck skin up over their mouths have EDS. . . NEXT DOCTOR PLEASE!!!🤬 . He was referring to Gary Turner, the world's stretchiest man. Then he asked why I'd want to know if I had EDS. He got angry and said "No treatment! No cure!" Then he just walked out. I never bothered to visit him again. I suspect he believed I had it, but was telling the interns not to tell the patient simply because he believed there is no treatment and no cure, and that perhaps I would get depressed or something. It was just so weird. It took maybe 5 more doctors to finally get 2 well-known ones to both say "yup, EDS" and easily diagnosed me. One was the head of a Chicago pain clinic. The other was Alexandru Barboi the dysautonomia guru-guy.

Most people should want to and do see a Geneticist for a proper diagnosis.

You must be seen in a genetics clinic

This isnt true

HSD in my case there are times when pain is so bad I can't make food or have strength to eat it, ceral is my meal of choice! When I haven't strength to make meals, or cut it minimies what I can eat

@@robertcrusher1972 There are also fat fast-food eaters, because they cannot cook themselves.

I’ve been anywhere from 265 at my heaviest and 113 at my lowest and everywhere in between...

If there is a correlation, there's probably due to misdiagnosis, as generally larger people have reduced range of motion, and some symptoms of EDS can overlap with obesity. However, I've seen hypermobile people who are certainly not small. The only reason I was underweight was due to food intolerances setting in at the same time, and it took me a long time to find what I could actually eat. My cousin had the same thing happen as gluten intolerance runs in the family.

One can react to any food, depending on one's own mast cell triggers.

Yes, esp with the mcas involvement.... there’s compounds in milk/dark chocolate and carob that consistently give people trouble. But white choc has this compound separated out and people have better luck with that version when trying

And triggers are not the same for all of us.

@@TheEhlersDanlosSociety chocolate loosens an intestinal sphincter udont know its happening then one day you get heart burn then turns to GERD then turns to BARRETTS esophagus like happened to me next step is throat cancer IF i cant find a way to keep the stomach acid out of my raw throst! Eds people need to avoid mint,caffeine, chocolate, and many other things that loosen an already loose esophageal sphincter.

@@TheEhlersDanlosSociety chocolate loosens esophageal sphincter u dont know it but it does and in time this can lead to Barretts esophagus as it has with me,my psin feels worse than death!

There are not many drs that know about eds.if i waited for one who did i would never have had a dr.at all.wonderkng where u live where drs are so plentyful? I live in Canada.

My GP doesn't know what most of my conditions are. I'm in a part of Canada with a shortage, so some people don't have a choice. I often do get a second opinion through a private clinic, but my doctor thinks POTS is normal, and doubted my ADHD diagnosis I paid $2000 for, and the only way for me to switch is to go without a doctor for 3-5 years as the wait list is really long. It takes years to see specialists here too, so waiting months between appointments is even worse to deal with.