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New Doctor, New Presciptions


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#1 MINItron

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Posted 04 January 2013 - 11:57 PM

So I asked my PCM for a referral to a different sleep clinic because the first on they sent me to was staffed entirely by pulmonologists who did not seem to be very interested in actually trying to treat me once they figured out that I don't have OSA. I saw the new guy today, and I am 100% happy with my decision to change doctors.

He talked to me for a few minutes, asking all of the usual questions, and looked at the results of my PSG and MSLT. Then he said that it was pretty obvious that I have narcolepsy, and they just didn't manage to catch multiple SOREMs on my MSLT. I present with all of the classic symptoms of N, even cataplexy, so I really don't think it was all that big of a stretch.

He immediately recommended switching from methyphenidate to modafinil since my insurance will cover it. He also prescribed protriptyline at bed time to help reduce my REM sleep. Apparently when I am in REM I breath so shallowly that my O2 saturation actually drops. This makes sense as my wife has commented that there are times when I appear to not be breathing when I am asleep. I have had bad experiences with amitriptyline and nortriptyline in the past, but I was taking it during the day.

It was so different to suddenly have my narcoleptic symptoms acknowledged instead of ignored and pushed to the side due to a lack of SOREMs on a MSLT. My confidence in this doctor is much greater already.

#2 munky

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Posted 05 January 2013 - 01:11 AM

Very glad to hear that you've found a doctor who was able to help! Sometimes, doctors of all types begin to think they're infallible, and it never hurts to get a second opinion. Especially if that second opinion leads to a correct diagnosis and treatment can begin!

I used to have an employee who was very, very sick. It started with what the doctors thought was a lung infection. They (There were two of them working on his case.) tried many different antibiotics--even put a port in his arm so that he could administer the antibiotics intravenously several times a day--and nothing worked. They did blood tests, chest x-rays, CT scans and a lung biopsy, and still didn't find the infection that they kept insisting it was. Then he started having kidney problems. Then heart problems that led to an internal defibrillator. Then seizures. I kept telling him to go to another doctor, to get a second opinion, but he wouldn't because "They know what it is! They specialize in this kind of infection. They just can't find it! They said sometimes it hides."

I kept telling him they didn't know what it was, they knew what they wanted it to be, but he wouldn't listen. I printed out articles from medical journals describing sarcoidosis and its symptoms, which exactly matched his. I printed articles from the same journals about the infection his doctors kept saying he had and its symptoms, which only matched on one or two points. Finally, after two years of all of this happening, he did listen. He went to another doctor, who took a look at the previous tests. That doctor took one look at the original chest X-ray and told him, "You have sarcoidosis." Sarcoidosis is a degenerative auto-immune disorder in which your immune system attacks your organs, and spreads throughout your body if it isn't treated. There's no cure, but they can keep it from getting worse--or at least slow it down. The new doctor told him if he'd gotten a second opinion before the kidney problems started, they could have prevented those, the heart problems and even the seizures. He's on the right treatment now, but because he waited so long, he's also on disability and can no longer drive because of the seizures.

Second opinions are important! If your doctor or specialist can't figure out what's wrong, or if he or she insists on a treatment that isn't working, you need to get a second opinion! I'm so glad that you did, and you're on the road to finding the right treatment. I hope you are also lucky enough to be one of those whose first treatment works. Good luck!

#3 MINItron

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Posted 09 January 2013 - 11:34 PM

The first night with the Protriptyline was great. I slept like a rock, all night. Last night was a different story. I had SP every time I fell asleep, even though I was on my side and the TV was on, and I was up every couple of hours because the dreams became so intense that they woke me up. I will give it a few more days to see how it goes. If it continues to be like last night it won't get more than a couple more nights. If it's hit and miss I will give it a chance to settle out.

Tomorrow will be the first day with 200mg of Provigil in the morning. I saw the doctor on Friday, and they put in the pre-authorization paperwork for the prescription then. It took until today, Wednesday, for the preauth to be approved. I was only a couple days away from completely running out of Ritalin. I'm glad it wasn't an emergency that I get that prescription.

#4 MINItron

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Posted 09 January 2013 - 11:34 PM

The first night with the Protriptyline was great. I slept like a rock, all night. Last night was a different story. I had SP every time I fell asleep, even though I was on my side and the TV was on, and I was up every couple of hours because the dreams became so intense that they woke me up. I will give it a few more days to see how it goes. If it continues to be like last night it won't get more than a couple more nights. If it's hit and miss I will give it a chance to settle out.

Tomorrow will be the first day with 200mg of Provigil in the morning. I saw the doctor on Friday, and they put in the pre-authorization paperwork for the prescription then. It took until today, Wednesday, for the preauth to be approved. I was only a couple days away from completely running out of Ritalin. I'm glad it wasn't an emergency that I get that prescription.