I have found an online group that has been incredibly helpful in my Chiari support stuff. They've answered some questions for me and pointed me in the right direction. I've also been made aware of a clinical trial through them and been able to research doctors.
One member posts a lot, and I do mean a lot. Everyday, it's a new questions. Literally hundreds of them. She wonders if she should quit work, apply for disability, all kinds of things. Well, today, I found out that she's never even been diagnosed. She got ahold of one of her MRIs, looked at it, and diagnosed herself. This troubles me. Self-diagnoses can get you in a lot of trouble. Not only can it be dangerous for you, but it can also make you taken less seriously at the doctors' offices when you go in there and TELL them what is wrong with you. You can't just go in and say, "I have Chiari." You can go in there and say, "These are my symptoms. Do you think it could be..."
I feel like my time has been wasted a little bit. I don't know why this has made me angry, but it has. I understand that this person's symptoms were very similar and that it could have been Chiari but now that they know what IS wrong (and it's not Chiari) I feel like I was kind of lead on.
Oh well. Nothing I can do about that.
One member posts a lot, and I do mean a lot. Everyday, it's a new questions. Literally hundreds of them. She wonders if she should quit work, apply for disability, all kinds of things. Well, today, I found out that she's never even been diagnosed. She got ahold of one of her MRIs, looked at it, and diagnosed herself. This troubles me. Self-diagnoses can get you in a lot of trouble. Not only can it be dangerous for you, but it can also make you taken less seriously at the doctors' offices when you go in there and TELL them what is wrong with you. You can't just go in and say, "I have Chiari." You can go in there and say, "These are my symptoms. Do you think it could be..."
I feel like my time has been wasted a little bit. I don't know why this has made me angry, but it has. I understand that this person's symptoms were very similar and that it could have been Chiari but now that they know what IS wrong (and it's not Chiari) I feel like I was kind of lead on.
Oh well. Nothing I can do about that.
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