r/eds

Hey,

So long story short we are having our daughter get a brain scan for Chiari for breathing issues, ear issues, pain, headaches, uneven muscle wasting etc. Which brought me into Chiari and Tethered cord. I have MCAS that has flares for years and only prednisone treats and regular allergy protocol only treats the rashes and itch, HEDS and POTS. All my symptoms came on 2021-2022 hard. Like can't go outside in summer hard. I have had headaches and neck pain since childhood and several pelvic surgeries and osteoarthritis, I'm 37.

Reading all these things it makes a lot of sense why I say I'm in so much pain but my old primary didn't really believe it or dismisses it. The headaches are not pots related and a lot of the symptoms seem like the severity and lack of protocol response make me think I should be assessed for chiari and tethered cord. My hips, sacrum and coccyx always feel glued together, and full, nerve pain down my left leg when I stand, constant psoas and psias pain. Have never been able to have my head straight always lend forward, I can't even wear my head up because the tension, I now can't nod side to side or up and down, I thought everyone hurt a bit when they sneeze, cough or tilt their head back until now and I now have intermittent nerve pain in my left arm down to my thumb, and also realized everyone else can see fine if they tilt their head back or to the side, I'm starting to develop a lot of cognitive issues and working memory- forgetting how to spell a word mid writing, forgetting spelling in general, forgetting what I'm saying mid sentence and other stuff. I also have non airway sleep apnea which happened when the headaches got bad then mcas, CPAP helps, I don't sweat also which happened with the headaches.. Just so many things.

Who in Washington State is good with these neurosurgical diagnosis and occult just in case? I live by Moses LAKE so now you know what we have been dealing with in terms of quality of care. I just switched to Tabetha Ratliff for primary in Spokane, because mine and my daughters primary just had no concerns and told us shrug that's life. She is now seeing Providence pediatrics. My MCAS was Kerry Drain but her office closed no notice and Dr. Valley for my heds diagnosis. I really want a strong doctor with familiarity because all of the obvious simple spinal issues but also how it seems this is likely why my MCAS has remained untreatable with protocols.

Thanks for your time, please keep your fingers crossed and pray for me and especially my daughter she is 13 and has been dealing with this for 4 years, please pray we find answers for her and she can just have the quality of life all her peers get to experience. Thank you

I’m fairly confident I have hEDS, due to my mom being recently diagnosed and having most of the symptoms she has +more. I’ve fainted more than 10x (I’m 23), and it has gotten worse along with many of my symptoms since getting into my 20s, which I know isn’t uncommon. Recently, I’ve noticed that many of the instances I faint are due to my clumsy self hitting a very sensitive part of my knee or elbow. I don’t believe it’s because of the pain, because I have experienced worse pain and not fainted or had any pre-syncope symptoms. I’m curious if anyone else has experienced this, or if maybe there is some connection with the fragility of veins in these joints that makes them so sensitive to triggering a fainting episode. I am planning to bring this up with a doctor, and am well aware of the POTS connection for anyone reading.
Thanks in advanced !