ehlers danlos syndrome · stomach issues

Appointments: Week of 5/14/17-5/20/17

Something I want to do is make a post at the end of an appointment week. I tend to have appointments 1-3 times a week, and I rarely go a week or two without an appointment. Since I can’t take you all into the appointments with me, I can at least tell you what goes on during them. I see a lot of different doctors for a lot of different things. Someday I will make a post with all the doctors and why I see them, but that is too much of a time consuming task for me.

This week I originally had two appointments scheduled, Gastroenterology and Orthopedic. My Gastroenterology appointment was today, just a few hours ago, and my Orthopedic appointment was supposed to be tomorrow, but it got cancelled, which is super sucky.

My GI appointment went okay. My doctor was happy that I finally have a diagnosis. He said that he had started considering EDS for me, but hadn’t felt like he had all the information he needed to tell me sooner. I keep trying to talk to him about Gastroparesis. I started seeing him about two years ago because someone had suspected GP. I saw this GI doctor, he did an upper and lower endoscopy, diagnosed me with GERD and IBS, and that was that. But, lately I’ve been having more and more symptoms that point to Gastroparesis. For those who don’t know, Gastroparesis is delayed stomach emptying caused partial/full paralysis of the stomach. When I have flares, they start with a big GERD flare. I get acid reflux and those gross sulfur burps. Yuck. My stomach will also feel like there’s a brick sitting in there, and I feel constantly nauseous and throw up. It also causes constipation and no appetite. Totally different from an IBS flare. I’ve had 2 of these flares in the last 8 months, and I’m still recovering from the last one. I mentioned GP to him again today, telling him that I’m aware that it can be a comorbid condition to EDS. He wrote me a prescription for something to help the GERD, and ordered an ultrasound of my gallbladder. I’m not 100% sure what he’s checking for. I was hoping he would order a gastric emptying study to see how long it takes my stomach to process food. I go back in three months, so I will definitely bring it up again. I plan on keeping a diary of flares, writing down every detail of them I can, so that I can show him what happens during flares.

I’ve been dealing with these flares for about two years now, they’re becoming more frequent, and I’d just like to know what’s causing them. Sometimes I get so frustrated with how slow a diagnosis process can be.

The fact that my Orthopedic appointment is cancelled tomorrow kind of ticks me off. I first saw this doctor in January, he did X-Rays and ordered an MRI, and told me he would call me with a follow-up appointment. Weeks passed, no appointment. I finally called his office and they were booking a month out. And now, its cancelled. I’d really like to know the results of that MRI. It was of my left knee because I have been having so many issues with it. He wants to make sure there’s nothing else affecting it besides EDS. I’ve been trying to get a better knee brace for over a year now. I saw an orthopedist last year that completely brushed me off and was an overall jerk. This one was quite understanding. But it takes so much effort to get an appointment with him. Unfortunately, I can’t buy the type of brace I need, and braces from the store are not cutting it anymore. I need something specific to my problem. And the waiting continues.

That actually really sums up this post well. All I can do right now is wait.


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