You're Fired!

Two minutes into my appointment my narcolepsy specialist basically pulls a Donald Trump and tells me he no longer wants to be my doctor. Why? Because he just found out I'm taking hydrocortisone for severe adrenal fatigue. He tells me there's no such thing as adrenal fatigue and that I'm getting "bad information" from my doctor. He said, "You do NOT have adrenal disease. Have you ever SEEN what a person looks like who ACTUALLY has adrenal disease"? To which I reply, "Yep. Every time I look in the mirror." I also told him that I was not asking his advice on hormone-related issues, just as I don't ask my hormone specialist to treat or advise on my narcolepsy.

I've butted heads with this doctor before over my holistic and integrated approach to medical treatment. But he's used to "knowing everything" and having patients just blindly accept his advice. The problem is, the drugs he had me on caused me to gain 70 pounds, made my depression worse, gave me kidney stones, atrial flutter, stomach ulcers, tooth enamel damage, etc. At one point, I had to decide that the pharmaceutical cocktails were only making me worse. He's had a bee in his bonnet ever since.

Ordinarily, I would have already said "sayonara" to a doctor with such an obvious god complex. I mean, I don't drive ten hours round-trip to see this guy because he's so warm and fuzzy. The problem is, he's the only doctor I've found that is knowledgeable about narcolepsy with cataplexy and is willing and able to prescribe Xyrem, the medicine I take that helps me to get restorative sleep. It's the ONLY narcolepsy-related pharmaceutical that I take, and I have found NOTHING else that comes to close to working well for me. In addition, I'm smack-dab in the middle of my Social Security Disability case, and he's the main doctor that is providing documentation of my disability.

So three minutes into my appointment, I go into a full cataplexy attack. Meanwhile, he's telling my husband that 5-htp, which I'm taking instead of antidepressants to help treat catapexy, killed a bunch of people several years ago. Total lie. And that it comes from China. Total misinformation. I don't know if he learned his scare tactics from the democratic party or what. There was a tainted batch of L-tryptophan that killed some people many years ago. But 5-htp is NOT L-tryptophan. And the company that makes it does not get their ingredients from China.

Two cataplexy attacks later, I leave with the answer to only ONE of the narcolepsy-related questions I needed addressed at this semi-annual visit. So he did at least decrease my Xyrem dose to address the sleep eating problem. Apparently this is common when your dose is too high. Who knew? I've gained about 15 pounds since I started sleep eating, so at least one positive thing came out of the visit. But now I have start all over with a new doctor, after I had to fight my HMO to get special permission to go outside my service area to see THIS winner. If anyone knows of a narcolepsy specialist in the Northeast Florida area that doesn't have H.U.B. Disease, AND is knowledgeable about Xyrem, please let me know!