Collagen disorders - it may not be Ehlers-Danlos syndrome! Dr. Diana Driscoll explains
Вставка
- Опубліковано 16 вер 2024
- Dr. Diana discusses a couple of the rarer collagen disorders that may be underdiagnosed. She discusses Stickler syndrome, Marshall syndrome, the eye effects involved and loss of hearing!
Read Dr. Diana’s amazing book of recovery: The Driscoll Theory potscare.com/t...
Dr. Diana Driscoll -- now seeing patients at POTS Care potscare.com/
Join the Rebellion Today: / potsrebels
Thanks, Cheeky! I have a T-shirt that says, "My hip went out last night, and it hasn't come home yet.". Have fun popping! ;)
It's frustrating when your docs don't agree, isn't it? For the forums of EDS that have no known defect of collagen, I *really* think our defects are elsewhere, but can affect the collagen. Personally, I think the diagnosis of "fibromyalgia" is sort of a non-diagnosis -- a catch all for numerous painful conditions... Just my 2 cents! ;)
I keep seeing EDS being diagnosed more and more frequently. I have stickler syndrome and never have I ever met another person with it outside of my family, so I'm certain it's being misdiagnosed because EDS is supposed to be a lot more rare than Stickler Syndrome. Thank you so much for this video even if it is years old now
I have type 3 I think, mostly effecting my joints
We need a better "rule out" for medical school. We also need to pay attention to those who could become great doctors with proper resources and support. This would work for politicians too. I wonder how many women working at Walmart could have become great physicians, or tradespeople who would be tremendous doctors.
Thanks for this. My last rheum said I had hEDS, didn't send me to geneticist. My new them thought it might be something else, Sent me to geneticist, found it was sticklers.
I'm so happy I could help you -- and I'm so happy you got a firm diagnosis! I often see hEDS overdiagnosed, but I'm glad you got answers.
Hi Chain of Songs, I'm so sorry to hear of your struggles. We may have some ideas for you if we knew something about your symptoms. I have a symptoms checklist on my site that may help, as may the forum there. I have a consultancy program, too. I WISH I could tell you who else to turn to, my friend. It's amazing to me, not only the lack of awareness, but the apparent lack of INTEREST by many doctors. I scratch my head over that most every day (OK, also while jumping up and down, screaming). :)
Yes I think the same about Fibro. I have 16 out of the 18 pain points so thought I might get an FM DX somewhere along the line but thought it would be before the EDS and not after........Anyway I am taking notice of the expert on connective tissue disorders for the EDS DX and considering he didn't really check me for RA I might look else where for for a Rheumy to check me for RA. I also agree about our defects laying somewhere else I say genetics loads the gun, environment pulls the trigger
My mom and other family have Osteogenesis Imperfecta and the same gene that causes OI also is responsible for the Classical EDS which is the type that I have. My Neurologist is the one who tested me and diagnosed me. My eye doctor is keeping a close watch on my eyes for any problems that EDS can cause, it’s already messed up my vision worse than it was when I was a teenager and in high school, etc.
Have you looked into oxalate sensitivity and fibromyalgia? My eyesight improved, plus joints, tendons, migraines, pain in all areas has dramatically decreased on the low oxalate diet. Most of my joints don't sublux anymore. Most arthritis is in remission. I also am on zero carb and taking bone broth and collagen. I no longer use a walker, and I've started dancing and hiking again. As a side effect, I've lost weight. My friends don't recognize me.
That is great info! I don't fit into the category of sticklers but it certainly was interesting information!... gotta go pop my hip back in! LOL Have a great night!
As if the Dr's are not confused enough already, you bring us this Dr D LOL. Got my EDS DX from a connective tissue disease specialist in March then went to a Rheumy specialising in RA last week.....Strong family history and markers for inflamation. Did not check me for RA at all and said I have a severe form of Fibromyalgia and not EDS 3 at all. Sheesh why do any of us bother LOL
Yeah, seeing some fingers, wrists, elbows, shoulders, ankles, knees, hips and probably some vertebrae does it LOL Be it just by millimeters, it can still hurt real bad and cause issues long term :/ Many people, both medical staff and general public assume EDS'ers fully dislocate all the time, and have very stretchy skin. Guess that's why it's so difficult to get diagnosed if you have the soft skin and sublux :/
Since my EDS RX was done by a rheumy at Dartnouth & I have Medicare my GP won't refer me to genetics. I think my Optho would in a heartbeat if my Medicare HMO would let him. Soinds like going down to Miami for my shunt might be good. Ugh.
I wonder how many folks in the medical profession don't know how to use google or Google Scholar? Your statement astounds me, as we learn these sorts of things in pathology classes in optometry school. Are doctors just forgetting it? I'm not sure, but doing my best to remind everyone!! Thanks for your encouragement... ;)
Diana Driscoll My condition is worsening and I'm very scared. I believe fully that I have MCAS and I really just want/need to talk to someone about it. It's ruining my life. I'm on the edge of not wanting to live anymore, and my specialist is neglegent and thinks I'm a hypochondriac.
I would so deeply value your opinion. Please contact me. :'(
Good luck finding treatment for your back mine spontaneously breaks thanks type 2 sticklers... Oh and orthopedic won't want to do a replacement if you're 39 even if you can barely walk. Best disease ever!
After months of knowing I have EDS, I finally got it properly on paper this past week! Now it does say Q79.6 in my medical files, along with joint pain and myalgia (without the fibro). And as I'm typing this, one of my elbows decided to sublux LOL I'm kinda a text book case of EDS-ht with soft skin. Subluxer, not sure anything has fully dislocated yet... Hmm is it bad I don't know if anything has been fully out? :D
Many of us aren't "fully out". ;) Funny phrasing, but subluxing is PLENTY! ;)
Drusen can be early sign of macular degen (not always). Not related to IOP. Sounds like someone may want to buy my new EDS and the eyes book? ;) I can't post links on these replies, but Google Scholar is hard to beat when looking up some of these rare mutations! ;)
Hahaha! That is just fantastic!
It sounds so simple, doesn't it? Genetics and environment! ;)
Lisa -- shunt as in brain shunt? Lemme know! Wrapping up our clinical trial of medical management to avoid brain shunts right now! 90% of "EDS" diagnosis are "clinical" (based on presentation -- not genetics). Interesting, huh?
First thing I thought reading this was man they need a sleep test after that diagnosis!