was diagnosed and managed for 2 years then
I moved. I just got a new sleep disorder specialist. She stated that I do not have the marker (gene) there, for it is highly unlikely I have Narcolepsy. Two neurological sleep disorder specialists at two different hospitals determine this from the sleep data I did. I am older than most who get diagnosed. I have the hallucinations audio and tactile, and I do have excessive sleepiness, but I do not just fall into the soup. Has anyone had any experiences that fall in and around the gene marker, differing diagnosis category?
To you all, Happy USA Labor Day weekend. If you can take rest with joy, then go for it; otherwise, take your meds. To be sure, I know I have a sleep disorder; my 2-week sleep diary says nothing but WHOA. I also noticed a few comments here in that I may have suggested my narcolepsy is with Cataplexy, it is not. The doctor says that without the Narcolepsy with Cataplexy symptomology and without the marker, I do not have Narcolepsy. Whether that is accurate, stupidity, or malpractice matters, not in some respects, as I have something wrong that is wrecking my QOL. I also have another condition that is being found to be undiagnosable though I have had no indication that, from the Medical perspective, I should go straight to a psychiatrist. However, because I can not get a diagnosis (they can not measure the hormonal and electrical brain reactions to my eyes and ears' communication with my brain), I am unable to know if it contributes to my sleep disorder, which prima facia it very well might. So now I sit knowing so much less about my medical situation than I did two months ago. Moreover, it will be 12 months more, before those who might see me in an effort to aid me will not do so unless I run the gambit of specialists and their testing This refusal to see me in lieu of or concurrently with the "what we must do for the insurance approval" is given knowing this is a waste of time and I will just have to live with it. I am stupefied.
My heart goes out to you,
. You must be beyond frustrated. I hope you keep advocating for yourself until you get the help you need. Gentle hugs. - Lori (Team Member)
I'm sorry for your condition
. I didn't know some sleep test require gene test, but here in my country in South East Asia I don't need gene test. The doctor do PSG and MSLT for me since he noticed about my symptom immediately. Please keep trying to get diagnosed. Hopefully you can get a better doctor! Thank you. I am beyond understanding. This is not my first rodeo but this is beyond me. I hope I can let it go. It's hard. She had her RN write to me as if I were making this all up. That I am sleepy and I should get a PCP. Together, she and my PCP will help me with my sleepiness. It's insulting and appalling.
Hi
. I really hope you find someone new. Clearly, this doctor does not understand narcolepsy. - Lori (Team Member)
I’m sorry this is happening to you. I think you should look for a new specialist, for the following reasons, in order of importance:
1) Your doctor does not listen to your experience, your case history, or treatment that was helping you. This demonstrates indifference to your well-being and individual patient needs.
2)Your doctor is dismissive of multiple specialists and (it sounds like) is denying you treatment that has been working. Arrogance or something else is motivating your doctor, not care. Very strange.
3)Your doctor doesn’t know what the heck they are talking about! There are two types of narcolepsy and that’s not a new piece of information. So it’s even more egregious they would counter specialists, given their lack of knowledge.
4)Using genetic testing is not common for most things, and using it to screen out for a condition that you already meet the criteria for and are under treatment for is very strange; usually these tests are used to screen for things like cancer risk requiring prevention, or rare disorders evading diagnosis over time. I can’t imagine what fresh hell this is. A new scheme by insurers, maybe? But why would the doctor be doing it?
TLDR: Kick that doctor to the curb and get one who listens and knows their stuff. Always find a doc who listens to you, the individual.I haven't met her in person. Thank you. The support is exceptionally important for me.
