Most people with Gastroparesis probably have the same exact frustrations when it comes to finding the right doctor to help treat their condition. Many doctors have no idea what the disease is, how to treat it, or how to empathize who those who have it. This isn't necessarily their fault. There are many outstanding GPs out there who have never heard of this. Some may even think of it as a disease they will never encounter within their practice. This actually makes sense - by the time a patient is diagnosed, they are already under the care of a specialist.
However, there are even specialists who don't have a strong handle on this condition. I have seen it first hand as I have gone to many of my wife's appointments. My intention here is to not call out any specific doctor - if anyone reads this, lives in the NJ area, and wants our input on the doctors we have seen, I will gladly discuss. But this isn't the forum for me to bash anyone, as much as I would love to. There was one doctor we went to nearby who had absolutely no idea what this condition was about - what is worse is that he tried to pretend that he did. There is nothing worse than that - if you don't know about the disease, just come right out and tell us that. Don't waste our time, don't waste your time, and don't waste the time of the people in the waiting room who may have conditions you actually understand. This doctor obviously read a page or two of a journal at some point, because the first things he said were: "You are too young to have this condition" and "Are you diabetic?"
First of all, age is not much of a factor in Gastroparesis - gender does play a big role (Females are much more likely to get the disease than males), and yes - being diabetic increases your chances of getting the disease. But in no way is Gastroparesis only connected to being diabetic. Nothing can be further from the truth.
In any case, this doctor pretty much talked to us for 15-20 minutes and ran us out of his office as if we were sticks of dynamite ready to explode. (I won't even get into what his bill was for the day - thankfully, we have insurance - but even the copay seemed like a ripoff).
The bottom line is this: There is nothing wrong, of course, with going to see as many doctors as you possibly can to try to get a better grip on the condition. However, in a disease like Gastroparesis, most patients know a lot more than the doctors do. If you find a doctor who seems to know what he/she is talking about, emphasizes with your condition, and does everything in their power to help treat it, stick with them - they are rare. If you read up on new treatment options or new diagnostic tests, be sure to tell them about it. Even some good specialists don't keep up with this stuff at all times. Educate your doctor as much as they educate you.
We found a great specialist in the Philadelphia area. We have a local doctor who at least understands the condition that my wife can go see, as well. But you have to be your own advocate. And if a doctor asks you some weird questions, don't walk to the door - RUN to it. There is no need to even waste your time.
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