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#1 Irishhh



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Posted 14 July 2009 - 06:41 PM

How do you feel about your doctor?

I was wondering if I can just go to my general practitioner for my narcolepsy stuff like medication. My neuro doesn't accept my insurance that I just signed up for... and that insurance is already turning out to be a big bunch of crap! Ugh! But oh well, this is how it is I suppose.

My gp is also my gyno and she is a great doctor! So funny and always listens. First doctor to listen to me about my excessive tired! So I mean, I don't have to go to a neuro do I? There aren't many around here and from what I can tell, they don't seem to be all about taking my insurance.

The place I go to with the other doctor is actually a clinic for poor folk like myself :) I guess I feel like she cares more about really helping me...

#2 shallow_water



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Posted 14 July 2009 - 09:07 PM

Hi there Irish~

I absolutely without a doubt love my doctor. I am fortunate enough to have found a wonderful neurologist who specializes in sleeping disorders.

I don't think it matters what doctor treats you for N as long as they understand the whole picture. If you love your primary doc then by all means ask her if she can treat you for it. Caring docs can be few and far between so if you have 1 special one hang on for dear life! ( Especially one that works with your finances and insurance)

#3 sunrisemoon



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Posted 14 July 2009 - 09:14 PM

I actually have the opposite situation. I have an awesome specialist who's a sleep/respiratory specialist. But I don't have a decent GP. Sleep doc has told me I have to doctor shop till I find a GP I can trust so that person can do all my running around for me (and stop me going insane dealing with other idiot docs).

I agree with S_W - if your current doc is willing/able to treat your N, I can't see why you'd need someone else (unless insurance cos etc require 'proof' from a 'specialist').

#4 Mike M

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Posted 14 July 2009 - 09:22 PM


My doctor is decent. He is a pulmonary specialist, but he does stay fairly current on narcolepsy. He has definitely had narcolepsy patients in the past and ironically I have a few PWN friends who also see him. So, I know that he is treating other PWNs. That said, I think the most important thing is the ability to trust your doctor. This condition is hard enough without having to worry about what your doctor will or will not accept. Thus, I too think you should see your regular doctor. I do think you need to talk to her, though. Due to the nature of our meds, she may or may not be comfortable prescribing the meds. You might also run into "difficulties" with your insurance because your doctor is not a "sleep specialist" - I am thinking specifically of Xyrem. Sadly, many insurance companies look for easy ways out of paying for our drugs and such. At the same time, you can build a good case for yourself by getting your sleep doctor to send your primary doctor a letter clearly explaining and diagnosing your narcolepsy. You should also get a copy of your PSG and your MSLT and make sure that your primary doctor has that too. Good luck. I am willing to bet that your primary doctor will be happy to do this for you as long as she thinks that she can get your prescriptions filled.


#5 2muchcoffee



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Posted 14 July 2009 - 10:16 PM

I absolutely adore all of my doctors!! My GP's (they are two women that share a practice) are truly amazing! They've been so supportive of anything that has been an issue, not just the narcolepsy. They are the type of doctors that overreact to things. When it was suggested that I go to a sleep clinic for the first time, I thought my doc had gone loony! I had only complained about being excessively tired once, so for the narcolepsy diagnosis to come back only a few short weeks later was amazing. My doc was shocked as well, she had laughed and said she thought she was only going to be ruling out a sleep disorder and we'd go from there.

My sleep doc is also amazing! He's the third specialist I tried... the other two creeped me out for some reason. (Another great thing about my GP- she would never send me back to someone I didn't feel comfortable with. Instead of belittling me or making me feel foolish about being creeped out, she just said that there must be a reason for it and that maybe there's something to my feelings that nobody knows about.) At my very first appointment with my sleep doc he assured me that he would find something that worked for me, that my quality of life shouldn't be anything less than anybody else and that if he couldn't find something that would make me feel awake again, he would send me to someone who could. His honesty is refreshing and he always seems so excited everytime we try a new combo of meds. He jumps out of his chair and says "I think this one is it! I have a good feeling about this!!" His optimism is amazing!

To answer your question about your GP prescribing your meds (keep in mind I'm in Canada so docs may be different in the US), my GP was comfortable up to a point. When I first read about modofinal, I told her about it and took some articles in for her to read. She called the pharmacist to confirm what dosage would be appropriate and was fine with that. Once I needed something more, she was able to admit that she wasn't comfortable with prescribing anything else to go with the modofinal and she then sent me to my current sleep specialist.
Hopefully your GP can help you with what you need!