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Old 06-21-2013, 10:40 PM #2
pjlla pjlla is offline
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Join Date: Feb 2011
Posts: 10
10 yr Member
pjlla pjlla is offline
Junior Member
 
Join Date: Feb 2011
Posts: 10
10 yr Member
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Quote:
Originally Posted by Unsure81 View Post

I may still not get a diagnosis this time but It has left me wondering if any of you have considered taking action for misdiagnosis or the poor treatment you have received? I don't know what options there are in these cases and whether a formal complaint can be made for a disease so hard to diagnose?
I get why you are frustrated. I know for myself, I was not diagnosed properly two times. I have a sister with MG, so I knew what symptoms of MG was. I first had a bit of blurred vision late at night. (Didn't think much of it at first). The next morning I'm good. Then I had a real late day at work, I'm in a conference room with a dozen other people and my left eyelid just can't stay open. It droops. I could only keep it open with my finger to support it. The next day I'm fine again. I realize at that point, that I had MG (or at least I thought I did). I went to the Dr's (General Practioner) I told her about my sister and my symptoms and told her I thought I had MG. Well, no blood test authorized. She gave me steroids (Medrol dose pack if I recall). Then had some kind of tests on my head (catscan\mri?) I'm good for about 3 months then symptoms return. I go again, see a different Dr and told her about the symptoms, the negative head scans etc. Told her I thought it was MG due to my sister's case etc. Again, left with steroids and also more tests (this time chest xrays\scans). Once again about 3 months later I go in again to Dr, this time they give me the blood test for MG and then I was diagnosed.

Although I'm frustrated with the Dr, I still understand to some point their side. It's not like being an auto mechanic where the mechanic can plug the car into a machine and it tells him what's broken. Also, I blame myself too. I should have said to the first Dr.. "Dr, I'll take whatever test you want, But I want you to give me the blood test for MG also" I didn't do that and I should have. I knew my body better then she did. I believe I was over 50% at fault for not forcing the issue.

Again, I get being frustrated. But I think it's unrealistic that a disease that effects way way way less then .1% of population will be diagnosed the first time.
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"Thanks for this!" says:
cait24 (06-22-2013), Unsure81 (06-22-2013)
 


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