Thank you! @erikas, I have seen multiple specialists. 7 neurosurgeons. 5 Neurologists. 2 Rheumatologists. 3 Nephrologists. 4 Physical Therapists. 2 Orthopedic Surgeons. 3 Infectious Disease. 8 Psychologists. 1 Allergist. 2 Pain Management. And so much more.

I have had 15 years of unexplained symptoms and a rare disease (medullary sponge kidney) that I can’t find a local doctor to treat because no ones ever heard of it!

Upon a Mayo Neurologist learning the symptoms, (joint hypermobility, POTS, gross motor function intermittently lost, bowel issues, chronic widespread pain, burning in muscles during use, systemic weakness, recurrent infections, hypertension, menstrual complications, high risk pregnancy) we also discovered EDS as an underlying issue.

From my genes and family history it looks to be Vascular but we’re confirming with another genetic test.

I’m in a state of relief for answers but grieving because it’s not the “curable” answer I was hoping for.

V-EDS has a life expectancy avg between 48-51 years. My mom just had a stroke right at her 51 bday. Her brother died at 51 from his 4th heart attack. Her dad died at 65 from aortic aneurism. My son has clotting and bleeding issues. I can’t regulate my blood pressure or body temperature.

I haven’t worked in almost 4 months. I’m getting a bit hopeless at times. I woke up a couple days ago unable to walk normally again. It’s like my legs get stiff at the joints but wobbly and weak so I can’t get them to stay in place when I walk. I’ve nearly fallen several times but I’m usually latched on to my husbands arm.

My son is only 8 and complains of constant worsening joint pain. I can hardly take care of myself at times and the poor guy just wants to rest too. He probably also has von Wildebrands as well as inherited the EDS.

I just feel stuck. And one of my Mayo doctors think it’s fibromyalgia, but fibromyalgia is the symptoms that I’m feeling from the EDS. I feel like they are missing that point there... psychology pain clinic seems like it will try and keep me from thinking about the pain but it’s with every step I take. Every breath I breathe and more so on days that I can’t move my arms or walk, I DO need help. In days that I can, I certainly don’t go being lazy and asking for it but Thats the vibe I got from the consult with the psychology pain clinic.. is that they think I’m abusing my right to ask for help when I’m actually very independent and only ask for help when I truly can’t get my body to move with willpower.

So I’m overall just stressed about the situation and hope that I can get the right “treatment” and not keep going in circles with pain cycles and wrong diagnoses.