NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › EDS/MS/Chiari › Newbie looking for advice about symptoms and appointments › Reply To: Newbie looking for advice about symptoms and appointments
I can totally understand the need for answers. For me I was so busy trying to get a doctor to help me with my knees, that I did not want to bring up all the thousand other problems I had for fear they would call me a hypochondriac. So I focused on the top few problems and what hurt the worst. This year when was bed bound after surgery and with a gift of a tablet I started Researching online. My son and I spent a lot of time watching TV and while watching The Little Couple on TLC, he asked me about achondroplasia. The scientist in me told him what I knew, then I dove into reading more. The more I read the more it lead to something else to read about and on and on. Then I came across EDS, and when I started reading about it I could not believe how much it fit me. So then I got on U tube and found Dr. D. I could not believe how I was able to miss it all these years. When I finally met with a Geneticist she said she had never met a person that fit description of Ehlers-Danlos better than me. She was amazed that no other doctor had picked up on it. I had only two doctors out of a hundred that mentioned that I must have something vascular and connective tissue wise going on. Of course that was a far as they went. I’ve even had doctors tell me they can’t help me don’t bother coming back. The worst doctor I saw told me I was in such bad shape for someone so young that there was nothing he could do to help me, and not bother trying to find someone else because no one to take me on as a patient because I was a too great of a risk. Nice! And this was a doctor highly rated and ” top in his field”.
Sorry about all the family problems. Life is hard enough without adding more problems. My Mom’s side is great, but the communication is lacking. I really only have my Mom and Aunt. I have no siblings and my dad’s family is dysfunctional. My husband family is dysfunctional as well. I have tried so hard to fit in and that will never happen. I have already wasted to much effort. You also, find out what kinds of friends you have when not a one visits you in the hospital or asks how you are doing. So now I am friendless. I went up to work today. It was the only day I could get for my mom to watch the kids so my husband could help me clean out my locker and get my things. I turned in my badge and walked out in tears. Over the last eight years I was slowly having to modify my life, house, car, and work to fit around all my mobility problems, but some how I did not see this coming. I still can believe that my career is over. I am too young to be this broken, but I am. It is funny, and not in a ha, way, how something’s you don’t see coming. Or may be you don’t want to because it to painful to think about. I think that is why I get anxious. I’m only going to deteriorate and how will I get by as I keep getting worse? I can’t work, I can’t really drive well, get around , or even shower. I rely on my husband to do everything. I am supposed be taking care of three kids, but without his help I would not be able too. That what scares me. I am in a situation that usually someone much older finds themselves in. I rarely leave the house, and that is the life of others like me. Life goes on for everyone else while those with health and mobility problems are forgotten. They are home bound, bed bound, etc..unable to work for income. It is a viscous cycle, and one that only people that have the same problems understand. For everyone else we are a drag.
I really hope your husband doesn’t have EDS too, but it sounds like it. It sounds like you, your brothers, and mom have the classical form, because y’all have the skin involvements. I have all the same scars and I had two surgical incisions open up. All your symptoms are almost identical to my problems. Dr. Diana has a symptom check list. You should fill it out. It is very helpful. This forum has been a big help. I have also found a few Facebook EDS groups. It helps to exchange ideas, because the doctors are clueless.