AnotherZebra

Hello! My story is like most, lengthy! The shortened version is…… My father as long as I can remember always had issues that no doctor could ever explain. He was born in 1943 and we have always lived in a rural area with no close Specialized hospitals. As I became older, I noticed myself, brother and sister seemed to be developing issues like my dad. when he had a really debilitating issue, I decided to dive head first into all of the years and years of his medical records. I then cross referenced them with his side of the family medical issues, and then myself, brother and sister. Then onto my daughter, niece and nephew. I was on a mission to finally figure everything out! I went to my primary care doctor with 75 pages of my family medical history and how it correlated to my findings. After an hour visit, pleading my case, she scuffed and said she would order all the tests. However, when they all come back negative she wanted me to stop being so driven to “find” something. People age. 7 months later the last of the results were in. I had nailed everything! We finally had answers! Sadly, it was not soon enough for my dad. He had a 2 back to back massive strokes and passed. I beat myself up everyday for not doing my nose dive sooner! The main diagnosis is Ehler’s Danlos hyper mobility with vascular traits (Genetic testing $3,500 out of pocket) This also causes Dysautonomia (Hospital work up with 4 day stay monitors and labs like crazy) with POTS (Tilt Table Test), Mitro Valve Prolapse and Murmur (ultrasound), Mast Cell Activation (breaking out from several things while in hospital) All of my diagnosis with chronic migraines, chronic fatigue, insomnia, irritable bowel, anxiety, slow pupil dilation, lots of floaters in eyes leading to constant pressure checks, slow healing wounds, hands and feet turning blue, having heat intolerance, unable to control my body temp, nails full of ridges, needing more medication than most for the item being treated, easy bruising, and the list goes on and on!!!! Which I am sure most of you can relate! Now, what lead me to this page is, I have been in menopause since age 45 (now 52). These last few years have been more intense in my hot/cold episodes. Once again I begged my doctor to do a hormone check. She said she didn’t think I was post (maybe pre) menopausal. Test came back I am that of a 70 year old she stated sounding shocked. She put me in for a referral to a gynecologist for hormone therapy. They have no appointments till first of October. And at last, here I am at 3:59 am nose diving to find my tribe once again! Is there anyone else in this forum diagnosed with Ehler’s Danlos and if so would you mind sharing what is working for you? I literally can not sleep for days. I am either pouring sweat or freezing cold, never comfortable. Walking from the car to the doctor office I need a change of clothes due to sweating. I have zero sex drive. I have zero energy. Thank you for reading this! It is therapeutic reading your stories. I thank each of you for being brave and telling your stories so others like me can the help we need! Hugs to all!