frustrated
May 13, 2016
I have always been sick all my life, not knowing why. When I started taking my BP more frequently, I realized alot of my symptoms were BP related, thus since been dx with dysautonomia, due to EDS. Before this time, I had pursued answers, with many clueless physicians, one who said my labile BP was due to menapause. I told him that train left surgically 30 yrs ago and shut him down quickly. The frustration of the medical system, being a registered nurse myself, has really infuriated me. The lack of knowledge, the lack of caring, the lack of follow thru, the lack of pursuing answers for people, the isolation felt among who to see and where to go, is beyond belief. Having some medical knowledge, I pursued a geneticist Dr Patricia Bader, who took the time in 3 hrs to review my medical history and immediately came up with EDS Type 3. She hit the nail on the head! I have all the classical symptoms that if put together in the same pot, showed "Vegetable soup". I am a book case, with every aspect of this disease manifested throughout my life that NO ONE picked up on. I ended up puttting together a chart, with cross references to my symptoms with many dieseases related to EDS and scarey to say, I had to tell my doctors what was going on. EDS causing Hyperadrenergic POTS with dysautonomia,( labile BP and GERD. IBS,) popping hips, Torn elbow tendons, fast deliveries at birth & prolapses/tears, poor wound healing and MAST cell issues. When I went off Claritin after being dx with Silent GERD (due to dysautonomia) causing sinus issues, and negative for allergies, my symptoms worsened this past year. MAST cell is tx w antihistamines, and Hyperadregergic POTS is helped w a anticholineric affects, sometimes gotten off of anithistamines. I am hoping that this may be one of many things I can do to help this beast! I have not been able to physcially work for 9 yrs, not knowing what was going on, just knowing I couldn't keep up, physically or mentally safely. Now, since I have answers, and haven't worked the past 20 quarters out of 40, I am ineligible for disability at age 56. So anyone out there who is experiecing any medical issues, go start the disbablity nightmere immediately. Don't wait like I did. Well, I wish everyone perseverence, peace, pain relief, answers, and hope.
Hello,
I suggest you get a lawyer to help you with your case. Although you haven't worked, the lawyer can help you get your SSI early. I am 55, and in the same situation.
I went through the same thing. In fact, I knew I had EDS-HT from research I did myself. When I asked my doctor about it, He had never heard of Hypermobility Syndrome. He gace me a referral to a rheumatologist, who blew me off with no physical exam. I went to a different rheumy, who did the EXACT same thing. A year or so later, my little girl (20) was referred to a rheumy in another city, who immediately DXed her with EDS-HT. I was floored. I made an appointment with him, and sure enough, I DO have it, and I gave it to her. It's been 3 years now, and I'm still struggling to fimd a doctor who has actual knowledge of this disease or who is willing to at least TRY to learn.
