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

Good grief!! I can't believe they diagnosed you with that, then never told you. But it does confirm something I've always felt, that you need your own doctor. A clinic type setting, or group of doctors just can't compare with having one doctor who is YOUR doctor. Even if you are sent to different specialties within the group, one particular doctor should be YOUR doctor, to keep track of all of the different results, explain it all to you and come up with a plan of treatment. A medical coordinator type thing!
Lizzie, in the records did it seem as if someone had actually diagnosed you with narcolepsy, or could it have been that some doctor suspected it, and the others just noted the word narcolepsy because it had already been noted down by a previous doctor? More like a billing thing than an actual diagnosis, I guess is what I mean.
It's a good thing this new guy is going to confirm the diagnosis. I usually complain about each doctor needing to rediagnose, but in this case it sounds like a very good thing. And how absolutely wonderful that you now have one doctor rather than a group, and that he is closer. You are probably MUCH better off with this new guy. At least he is communicating with you! Score one for our side!
Hugs,

The place i went to before was an actual "Sleep Disorder Clinic"
So they should have been on the ball much more than what they were. I think some of my tests leaned towards narcolepsy, and then it went from there. But they did believe I have Narcolepsy with Cataplexy? not sure of the spelling.

I do feel a little bad, cause I must have been looking at him, like, Who are you, and what are you saying?? My husband wants to call the old place and complain. They rotate doctors so much there, that I don't know if it would do any good.

I too am glad he wants to confirm it. I don't want to start new meds, or have another weird diagnosis with out it being confirmed to the max. But after all he explain, it makes a lot of sense to me.

My eldest daughter said she remembered my neuro once mentioning that I could have it in addition to MG, but since I was tested with the sleep study, and using the bi-pap, they must not have found anything. Little did we all know. they never sent her anything. I mean, shouldn't the neuro be notified?

Well, I'm starting to vent again, and I'm beginning to ramble, so I'll close
Love lizzie

Well, keep us posted on the results. I'm as anxious as you are to find out! This new doctor of yours really sounds nice. I'm so glad for you that you found him, and got away from the other group. Will this new one keep your neuro updated about results?
Hugs,

Hey, Lizzie...I'm no lawyer, but I believe this would fall under medical negligence and/or endangerment. What if you had fallen asleep behind the wheel of your car? And yes: what about a treatment for heaven's sake!

I hope they get this under control and that no more ugly surprises come your way. We have enough with this stuff!!

Hang in there, Lizzie.

Hey Sharry,
I hadn't thought of the mal-practice part of it, but I do believe it was grossly incompetent of them. I've calmed down about now, but I still have a little anger in there festering. I have my sleep study in about 31/2 weeks, the one for narcolepsy. It will be a full twenty four hour stay in the hospital. So that will be a pain in the neck, but I'd rather be certain about it, than wondering,or saying..they think I have etc..
medical stuff drives me crazy
love lizzie

Should be interesting, Lizzie! I'll be waiting for your post about the results. I've wondered if it would be worth my while, plus the expense, of asking my doctor to refer me for a sleep study. So many of us have sleep apnea, and I thing I choke on my spit occasionally while asleep, too.
Hugs