Google saved my life!
If I live to be 100 years old, which is pushing it for me...I figure I have about another good 10 years left, anyways, if I did live to be 100, I will never understand how the medical community works. I am, however, beginning to understand though, why they call a doctor's office a 'practice' because they really have no idea what they are doing. I have also decided that people are living longer these days because of Google and they figure out their health problems on their own, then go tell the doctor what they need. The doctor then looks it up on Google and confirms that yes, you are dying of Cancer...(Well, doesn't everything indicate a possible carcinoma?)
Okay, I may be a little harsh in my assessment of doctors but there is some truth to it or maybe the truth is, we/I have idolized doctors to be something bigger and better than they really are. I still don't understand why I always have to come up with the solutions to problems my kids have. It's so annoying!
Last night, a friend invited me to a presentation on Hemophilia. I went but only because she had invited me. There were several pharmaceutical companies there with booths set up and some guest speakers. During one of the talks, they talked about bleeding around the joints. They said it feels like a bubbling, tingling sensation. I immediately paid closer attention because Shelbie has often complained about this sensation and almost always when her platelets are low. She has mentioned it to many doctors in several different specialties and they all shrug it off. The other strange happening for Shelbie is that for the past 3-4 months, she can hardly walk without pain. In fact, yesterday I broke down and bought her a knee brace to help her get around easier.
So, back to this meeting. They went on to say that most Hemophilia patients end up with debilitating joint pain and disfigurement because of the joint bleeding. Once the bleed stops, iron is left behind and begins irritating the joint and wearing it away. Over time, you end up with inflammation and pain from the old bleed. Sound familiar?!!! Ya, this sounds exactly like the cycle Shelbie is in. After the presentations I talked to a couple of the reps and discussed Immune Thrombocytopenia Purpura and if low platelets would cause similar symptoms that Hemophilia patients experience. Sure enough, they confirmed that this is a common problem in ITP patients too!!
I'm so frustrated! Why doesn't the ITP community ever talk about this problem? Why hasn't our doctor been aware of this problem and looked further into helping her? Even Hematologists just look at us and brush the complaint aside. Shelbie has had ITP since she was three years old! That's a lot of opportunity for joints to bleed. Once again, I feel like we are a day late and a dollar short. Think of all the pain we could have prevented if we had only known about this condition sooner.
I just don't get it. This seems like something your average doctor should be aware of. Arghhhh. Sometimes, it's the little things that become so frustrating.
Okay, I may be a little harsh in my assessment of doctors but there is some truth to it or maybe the truth is, we/I have idolized doctors to be something bigger and better than they really are. I still don't understand why I always have to come up with the solutions to problems my kids have. It's so annoying!
Last night, a friend invited me to a presentation on Hemophilia. I went but only because she had invited me. There were several pharmaceutical companies there with booths set up and some guest speakers. During one of the talks, they talked about bleeding around the joints. They said it feels like a bubbling, tingling sensation. I immediately paid closer attention because Shelbie has often complained about this sensation and almost always when her platelets are low. She has mentioned it to many doctors in several different specialties and they all shrug it off. The other strange happening for Shelbie is that for the past 3-4 months, she can hardly walk without pain. In fact, yesterday I broke down and bought her a knee brace to help her get around easier.
So, back to this meeting. They went on to say that most Hemophilia patients end up with debilitating joint pain and disfigurement because of the joint bleeding. Once the bleed stops, iron is left behind and begins irritating the joint and wearing it away. Over time, you end up with inflammation and pain from the old bleed. Sound familiar?!!! Ya, this sounds exactly like the cycle Shelbie is in. After the presentations I talked to a couple of the reps and discussed Immune Thrombocytopenia Purpura and if low platelets would cause similar symptoms that Hemophilia patients experience. Sure enough, they confirmed that this is a common problem in ITP patients too!!
I'm so frustrated! Why doesn't the ITP community ever talk about this problem? Why hasn't our doctor been aware of this problem and looked further into helping her? Even Hematologists just look at us and brush the complaint aside. Shelbie has had ITP since she was three years old! That's a lot of opportunity for joints to bleed. Once again, I feel like we are a day late and a dollar short. Think of all the pain we could have prevented if we had only known about this condition sooner.
I just don't get it. This seems like something your average doctor should be aware of. Arghhhh. Sometimes, it's the little things that become so frustrating.
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