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Old 11-01-2006, 12:42 PM #1
Maxwell'sMom's Avatar
Maxwell'sMom Maxwell'sMom is offline
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Join Date: Oct 2006
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15 yr Member
Maxwell'sMom Maxwell'sMom is offline
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Join Date: Oct 2006
Posts: 371
15 yr Member
Default very frustrated, new diagnosis?



Okay, I posted this on the other braintalk, but I'm so frustrated, just incase some don't go there anymore.

yesterday, I met with my new Pulmonary dr, as my old group is no
longer in my network. And I'm kind of glad, as this doctor is about a 10 minute drive, compared to the old ones at an hours drive.

Anyways, he wanted to first talk with me my about my previous doctors believing I had Narcolepsy. I instantly felt confused, and thought...What are you talking about? As NO One, and I do mean No one ever mentioned to me that I was Narcoleptic. Each and every time I went to those appointments, my husband had always gone with me, and he too said they had never said anything, it was something we'd remember!

So, because I was looking at this new doctor like, well, he was mistaken, and probably had the wrong patients files, he sat down, and showed me every time it was written down in my files. Some were written on the sleep study results etc. I was dumbfounded. Just completely shocked that no one ever said anything, or hey what about treating it???

He wants to do his own confirmation tests, so in a couple of weeks, I have to go in and have some test done. Before he starts to treat me, he wanted his own confirmed tests.

I feel so angry, and I know this probably seems weird, but I feel betrayed as well. I don't know how many different pulmonary doctors I had to see through that old group, and not one of them ever said a word to me. Nothing Nada. They did this rotation kind of thing with patients.

He told me to go home and google all I could on Narcolepsy. From all that he told me it fits, but I'm still in a bit of shock.

It doesn't change anything in how I feel, but I really hate having another weird diagnosis. I long for the days, when all I had was irritable bowel syndrome, and endometriosis..you know..normal stuff. I'm serious, I'm so discusted with my body right now..
I did learn that narcolepsy can be from the immune system not working right...um what else is new?

thank you for allowing me to vent. It helps.
Love Lizzie
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