Thank you so much Kevin, brilliant info! I really need to get your book and a good PT! You are saving lives with this info, I promise. Rock on. (Thanks EDS Awareness for presenting him and recording it!)
You have forgotten to include speech pathology for assessment of pts with complaints of swallowing difficulty and occupational therapy for assessment of need for assistive devices and assessment for and fitting of ring splints. Fellow EDSer here and occupational therapist.
Since I was a baby I was told that "my ligament are long" and nothing else. 9 years ago I started to have double vision , headache , confusion and dizziness...I was called every name under the sun by doctors and family all that saying that it is my head , that I need med because this is nothing but crazy talk. The thing is that I don't have pain at all when having dislocation (my jew) or subluxations ( currently my neck, both knees , shoulders and even my thumb to name a few are not in place). Even when asking the doctor to be tested for eds she just asked if the reason I want my shoulders to be in place is because "it is not pretty". Thank you for this video I am a bit lass scared now to continue on... p.s I was send by doctors to massage and osteopath and now I understand that they are the reason for my new decline (as it seems by 27:00)
I just happened upon this, and it really is a temporary miracle for me. My primary diagnosis, after 4 weeks at one of the most well known "Clinics" in the world- I'd say that everyone would know them by name. I was diagnosed with "Auto-Immune-Mediated Autonomic Dysfunction/Failure Neuropathy", and this particular Facility does not believe that this condition is at ALL related to EDS. That was 3 years ago.. I have very severe Orthostatic Hypotension & it took a very long time, several almost comical diagnosis', and a very not at all comical 30+ concussions, (For whatever reason, my Auto-Immune disorder is extremely aggressive and has never been seen before anywhere else in the world- and my guess is that is why my HypoOrthostatic is so severe) I have had 5x where I had zero BP (luckily in the hospital) but it bottoms so quickly when it is active- lying to sitting- 90/70 to 70/55 - at least and I wish I were exaggerating- 1500+ Syncope episodes), Post-Concussion, TBI, which resulted is permanent double vision, and went from 20/60 vision to 20/200 due to damage to my brain. All I ever hear is that my case is too complicated. I have been diagnosed with EDS, but because of my head trauma, the "best" that my neurologists can come up with is that I can't walk. I need to crawl. So, 3 years of crawling have completely destroyed my joints. I can hardly move my head, I have constant headaches that are excruciating but my pain level is excruciating. Nursing Home was last recommendation. I'm only a 40 yr old "girl"😉. I've been patient with the Med. Community knowing how complicated my case is. All I'm asking is that I'm rewarded for that. I'm not expecting miracles, a cure, or even an answer. Just a little help. You'd be shocked how easy even people who love you can give up when you don't have answers.
I’m so sorry the medical community has treated you this way. Why in the world would they allow you to crawl or expect you to crawl. The world has wheel chairs. Have you gotten better care since you posted your comment?
I blacked out, after standing up too quickly, came too, hands tremoring, had to crawl into kitchen (because i couldnt stand) pull myself up, because my kitchen sink was running. Of course!! I can't even get a diagnosis!
Same here! I seen 3 rheumatologists they all told me fibromyalgia. A geneticist mixed with my own suspicions confirmed Classical Eds type 2. Did your neuro give you a treatment plan?
Thank you so much Kevin, brilliant info! I really need to get your book and a good PT! You are saving lives with this info, I promise. Rock on. (Thanks EDS Awareness for presenting him and recording it!)
You have forgotten to include speech pathology for assessment of pts with complaints of swallowing difficulty and occupational therapy for assessment of need for assistive devices and assessment for and fitting of ring splints. Fellow EDSer here and occupational therapist.
I so agree! My fingers are bending backwards now, no strength. I absolutely need help with devices and swallowing is becoming more difficult.
Since I was a baby I was told that "my ligament are long" and nothing else. 9 years ago I started to have double vision , headache , confusion and dizziness...I was called every name under the sun by doctors and family all that saying that it is my head , that I need med because this is nothing but crazy talk. The thing is that I don't have pain at all when having dislocation (my jew) or subluxations ( currently my neck, both knees , shoulders and even my thumb to name a few are not in place). Even when asking the doctor to be tested for eds she just asked if the reason I want my shoulders to be in place is because "it is not pretty". Thank you for this video I am a bit lass scared now to continue on...
p.s
I was send by doctors to massage and osteopath and now I understand that they are the reason for my new decline (as it seems by 27:00)
I just happened upon this, and it really is a temporary miracle for me. My primary diagnosis, after 4 weeks at one of the most well known "Clinics" in the world- I'd say that everyone would know them by name. I was diagnosed with "Auto-Immune-Mediated Autonomic Dysfunction/Failure Neuropathy", and this particular Facility does not believe that this condition is at ALL related to EDS. That was 3 years ago.. I have very severe Orthostatic Hypotension & it took a very long time, several almost comical diagnosis', and a very not at all comical 30+ concussions, (For whatever reason, my Auto-Immune disorder is extremely aggressive and has never been seen before anywhere else in the world- and my guess is that is why my HypoOrthostatic is so severe) I have had 5x where I had zero BP (luckily in the hospital) but it bottoms so quickly when it is active- lying to sitting- 90/70 to 70/55 - at least and I wish I were exaggerating- 1500+ Syncope episodes), Post-Concussion, TBI, which resulted is permanent double vision, and went from 20/60 vision to 20/200 due to damage to my brain. All I ever hear is that my case is too complicated. I have been diagnosed with EDS, but because of my head trauma, the "best" that my neurologists can come up with is that I can't walk. I need to crawl. So, 3 years of crawling have completely destroyed my joints. I can hardly move my head, I have constant headaches that are excruciating but my pain level is excruciating. Nursing Home was last recommendation. I'm only a 40 yr old "girl"😉. I've been patient with the Med. Community knowing how complicated my case is. All I'm asking is that I'm rewarded for that. I'm not expecting miracles, a cure, or even an answer. Just a little help. You'd be shocked how easy even people who love you can give up when you don't have answers.
I’m so sorry the medical community has treated you this way. Why in the world would they allow you to crawl or expect you to crawl. The world has wheel chairs. Have you gotten better care since you posted your comment?
I blacked out, after standing up too quickly, came too, hands tremoring, had to crawl into kitchen (because i couldnt stand) pull myself up, because my kitchen sink was running. Of course!! I can't even get a diagnosis!
My primary does not do their job, have no team. I w been gaslit, I am in pain every minute of every day everywhere
I didn’t go to a Rheumatologist for my Diagnosis, my Neurologist is the one who Diagnosed me with my type of EDS. I have Classical EDS type two.
Same here! I seen 3 rheumatologists they all told me fibromyalgia. A geneticist mixed with my own suspicions confirmed Classical Eds type 2. Did your neuro give you a treatment plan?
I don’t have bilateral sacral dimples. I have one big one in the middle. hEDS
Is anything changed and can you use the protocol if you have had scoliosis surgery? I hope you are still following this.
thank you!
Does he still take messages from PT on FB?
I didn't see rheumatologist