I am so sorry for all of the pain and fear that comes with these health problems. I completely understand having one thing after another slip away and yet, at the same time, it feels so sudden. I want to smack those terrible doctors of yours. Ugh!!
I saw my gastroenterologist for the first time yesterday and it went well though didn’t cover much. I am to have an endoscopy done to check what condition my esophagus is in after all of these years of acid problems. I said that I have Ehlers-Danlos, Dysautonomia, and still have to rule out Multiple Sclerosis and Mitochondrial Myopathy. He said Ehlers-Danlos sounded familiar and he asked what it was exactly. He actually wanted to know! I think it helped that I can bend my pinky finger so far back so it’s obvious that something is not right and I was also in extreme pain yesterday in a number of joints. My lower back and the base of my skull have been giving me a lot of problems lately to the point that, for the first time ever, I considered sitting in a wheelchair when my husband and I stopped at some stores after the appointment. During the appointment, I was in so much pain. My head/neck was killing me and my lower back made moving difficult. My doctor. Dr. Ansari of Fenton, MO for anyone who may read this who is near there, was incredibly nice. He saw the pain I was in and how weak and shaky I was and seemed very concerned and considerate as I slowly climbed on to the medical table. I was shaking as I was getting off the table and he even helped support me as I got down. Maybe other doctors or people are like that but little things like that are so alien to me. It completely blows my mind when someone is actually decent. I don’t know if we were short on time (I did arrive late despite all efforts to get there on time) or if my doctor is waiting until after the endoscopy to address other issues but all of the other stuff wasn’t really addressed in this appointment. He seemed satisfied that Zantac was helpful so far and did say he wants to keep an eye on how it goes because I may need to try out another PPI. He was reluctant to have me travel 3 hours just for him to do an endoscopy but I’m seriously tempted to have him do it instead of someone closer. It is hard to find people to trust and I would rather keep things as limited as possible to avoid a “too many cooks in the kitchen” kind of thing. I would hate it if I have an endoscopy done by someone else and then Dr. Ansari says it didn’t quite check everything that he wanted to see. His office (with a receptionist who was absolutely atrocious and disrespectful) had trouble with my insurance so now I have to work that out on my own before I can schedule the endoscopy. At least my husband can be a huge help with that. Ever since I was little, I absolutely hate phone calls with a fiery passion. And if things get messy, I really hate having to work with a bunch of different people to try to get things straightened out. My husband has always been helpful in that regard with handling phone calls for me and, as he gets more and more protective as my suffering increases, he will “strap on his Staff Sergeant boots” and is willing to fight hard to make sure I get the care I need. I don’t know what I would be able to do if he didn’t help me with so much. He is not in the military anymore but his past deployments really drive home the “I can’t take care of myself!” feeling. Being alone for one week or even a weekend can be scary to me because I have no one else. He also had two separate cancer scares this year alone so the idea that illness or random accidents could affect his life or ability to get around . . . is not fun. The intimidation of an uncertain future is so thoroughly life-changing.
I too stumbled across EDS by accident. I was doing an image search for finger splints because I was so desperate to find some way to support my fingers and stop the pain. In the results was a picture of the Beighton scale. I thought ‘Hey, wait a minute, I do that!” Digging into that I immediately see the name Ehlers-Danlos Syndrome and things start making sense. I then find Dr. Diana and I rapidly fall into a whole new world where everything makes so much sense and all of these random things fit together. Symptoms that I had no idea happened for anyone else. Things that actually have official names. It’s insane. Checking Dr. Diana’s symptom list, my goodness I have a lot of that. Over 100 of them I think. I have to check again and count it out but I definitely have so many of them.
Hopefully I can get the endoscopy thing straightened out soon and I have a neurologist appointment in a couple weeks. At the rate that my joint pain is going, I may have to squeeze a rheumatologist in there so I can find out exactly what condition my joints are in.