Tuesday, October 16, 2012

Geniticist Appointment Update

Last Friday, we went back to Cincinnati for our Genetics appointment. This was our first time to see the new doctor. Of course, that always concerns me. You really never know what kind of doctor you will get until you are there, sitting in the exam room. I've found that even if a doctor comes highly recommended that doesn't necessarily mean he or she will be a good fit for you either.

Anyway, we met both with the Geneticist and a genetic counselor. The doctor was very nice and she seemed knowledgeable; in fact, she has EDS herself! As does her daughter. The genetic counselor also has EDS. It was pretty surreal, really, to have all of us there in the room with EDS. Overall, our appointments went well. She examined Katie and said she was a 8 out of 9 on the Beighton Scale  (scale used to diagnose EDS.) So, she was officially diagnosed with EDS. We talked about what she could do to take care of herself, and perhaps keep her from getting as bad as I am. She wants her to go to Physical Therapy. But, we need to find a PT who either knows about EDS or is willing to learn. She also needs to find a form of exercise that she can do on a regular basis. While I expected her to be diagnosed, it was still hard to hear. She really didn't seemed fazed by it one bit. I don't know if that's a good or bad thing. I think it helps that she is basically asymptomatic. For her, that probably makes handling the diagnosis easier. But, I was basically without symptoms at her age too. So, I think I'm looking at it from a different viewpoint.

My visit went okay. I have to say, it was very hard for me to focus with having Katie being there and so on my mind. I had questions I forgot to ask and I wont be seeing her for another year! I can call and talk to the genetic counselor at anytime and I'm sure I will be doing that once I compile a list.  One of the things that we did talk about was my autonomic nervous system issues. Both the counselor and doctor agreed that it sounded like that's what I am dealing with. They did say that it was much more common in younger EDS patients. I do know that it there are plenty of middle aged woman with these types of issues though. And, I'm sure that plenty of them don't have the diagnosis. I need to up my fluids and salt intake. We didn't discuss if any further testing in that area would be helpful. That's another question that I need to ask.

Something else we discussed was me starting on a daily antiinflammatory  medication. This is something I'm really not in favor of. I'm worried about it affecting my digestive system, which is already not functioning very well. The doctor brought up the fact that the narcotic pain relievers can become addictive and that you can build up a tolerance towards them. Of course I know this, but this is a very hot topic these days. Too many doctors are afraid of their patients taking these kinds of medications (I'm not saying she was one of them, but she did bring it up.) In reality, those who abuse these medications likely do not have chronic pain, they are using them to escape life much as an alcoholic uses alcohol Meanwhile, those who truly need these meds are being limited or denied them all together. Here is a very good manual about  Intractable Pain.  Be sure to read about Opioid use for chronic pain starting on page 10.  In my case, I use the narcotic pain relievers very sparingly; maybe two or three times a month. It's hard for me to rationalize taking a med every day, when it could cause more damage than the current medication I'm taking. She did bring up the fact that it could help prevent pain which was a very valid point and worth considering. Maybe someday I will go the antiinflammatory route, but for now I think I'm sticking with what's working for me.

I did not discuss getting a wheelchair with her either. I see my primary care doctor in a few weeks and I will bring this up to him. I had been thinking of repairing my mother's old wheelchair, but since I've met my deductible, I'm considering getting the insurance to cover a new one. I figure I can get a manual one now and if down the road, I need a power chair, hopefully enough time will have elapsed that they will cover it too.

I hope you are enjoying the fall weather wherever you are. The trees are nearing their peak here and I've been trying to go out nearly every day so I can enjoy them. I can lay in our bed and see the most beautiful Oak Tree changing right before my eyes. Everyday, there's a little more color.

Well, it's time for me to get some sleep. Last night was a long night. I didn't get to sleep until 2 a.m. and I woke up at 6 a.m., so I'm very tired and ready to get a good nights sleep. Oh, I hope the pain information I shared will be helpful to you. Please feel free to pass it on.


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