Welcome to my channel! My name is Mickey and I have Ehlers Danlos Syndrome among other things. Here on my channel I post videos about my conditions and just try to have fun! Life with chronic illness isn't all bad, it just means your roller coaster has more hills!
Childrens Hospital in Washington DC will do genetic testing for EDS on adults and children. You have to call, then email after the initial phone screen then they send it to the doctors to contact you back. Then they finally set up an apointment. Ours is in 6 months. We've had a hard time getting someone to test.
I so need to try again to get genetic testing done here in the UK. Just getting my h-EDS, Fibromyalgia and CFS diagnoses took 19 years. However, it was my research and me telling my doctors what I thought it could be that got me there. However, classical EDS is what I have suspected. I worry for my son. My health has totally crashed over the past 5 years. My joints seem to be weakening literally day by day. You are right, saying that some folk treat illness as a 'urinating' contest and just try to invalidate other sufferers. I know you made this video 6 years now, but I hope you are ok. Thank you for making this video. I've got so many doctors appointments, it makes me feel a nuisance asking for more tests.
Hey hun just wanted to let you know your wheels are on backward if you didn’t know. For the tires the arrow shape needs to face forward. Hope you didn’t find that annoying but it makes a difference
You are a wonderful person. I wish you a happy life. My name is Ali from the Arab country of Iraq. Great video and you are amazing too. I hope you recover. You are a good girl
horrid things ,ive just had rig directly to stomach fitted .very painful proceedure but feeding is so much easier ,no ph tests before hand either ,good luck
⚠️⚠️⚠️*KEEP A HARD COPY OF YOUR GENETIC TEST* RESULTS - You may outlive your diagnosing doctors, and your records can disappear, and then some new doc with some new but wrong training can make you go through all of this again. It took years to get a special test for the hemangiomas in my spine, which appeared after I was assaulted - the treatment for such was to build baskets of muscle around every joint, but I would need to stay in shape my whole life. Well, 10 yrs later, all my work had kept me well, but illness has forced me to be sedentary. New system. New docs, no access to old records, refuse to do required special MRI & again, just like before, do regular, say there is no problem. I live in terror of the pain I survived because one wrong handling by docs cand result in these hemangiomas swelling up against my spinal cord. Two different SURGEONS refused to put a collar on my neck during transport. I had shooting pains from my neck up through my skull to behind my rt eye. They took fugging xrays, which, of course, showed nothing, and I was 6 months in pain, for which, I *cannot* take NSAIDs or Opioids. Another example is, I had sinus surgery. Years after my assault, I finally got to see my former sinus doc about sinus issues. He said, "You need sinus surgery, you have a deviated septum. I said I'd already had sinus surgery - at which point he interrupted and said "no you didn't - or, you had a terrible surgeon." I said, "You were my surgeon -" He interrupted again, denying he ever saw me. I handed him my record but finished my sentence, "- but I was violently attacked, and my face was smashed." He looked at my current xrays, done decades later, after face surgery, and said, "There's no evidence for that!" We are *both* lucky there was a machine between us, and I had been careful to take melatonin the night before, sleep as much as I could, eat breakfast, drink ¼ RedBull (to keep frontal lobes/executive function/better-decision-making online when blood goes to stomach), and avoid the Interstate on the way in. I just wish I could have taken his butt to court for malpractice because, as a student of Forensic Anthropology, I knew that bone heals & even natural sutures oblitterate over the years. What he wrote in my chart caused my pcp to deny I ever had a spine injury and I had to start all over with new docs who also don't do the right test - and some who even refuse to include "such an old record" in their system, who now don't have all the othere pcp's records.
I have an appointment on July 26th 2024 to ask my doctor for a port. I have POTS, EDS, and Gastroparesis and I started iv fluids more recently. I have overused my one and only good vein for around 15 years now (tested for different disorders and got iv fluids multiple times a year since I was 4. I’m 19 now.) and last month it gave up and formed too much scar tissue to access it. I’m terrified and in pain every time I get an infusion because my veins are too small and they can barely access them. Any vein that isn’t in the bend of my arm will make me pass out if attempted to be accessed. I got Charlie horses that lasted over a HALF HOUR the last time they tried my forearm. Without infusions, my heart rate while sitting in my wheelchair outside can get anywhere from 130-175. After an infusion, my heart rate rarely crosses 120. I fought my doctor to get more infusions than once a week so I’m terrified of what he’s going to say when I ask for a central line. My mom has some of my same conditions (gotta LOVE genetic disorders!) and just got approved for a port. I’m hoping that my story might make him more open to the possibility of getting a port. Ever since I came into the world, I could not drink enough for even a normal person. I’ve had heat exhaustion more times than I know because of this chronic dehydration. My doctor is pushing back at the idea of iv fluids because he doesn’t want me to lose the ability to orally intake water, but when do we give up on my useless mouth??? I’m 19! I haven’t been able to drink properly for all 19 of those years. Why are we so focused on saving a function that has NEVER worked?? Infusions help me become a normal functioning person that can process food and toxins and posture changes!
