Hi everyone, I’m hoping someone here has been through something similar or has advice.
I was diagnosed with narcolepsy type 2 when I was 17 (around 2015). At the time, I was a minor and didn’t have direct access to my medical records. Since then, my situation has gotten complicated. I no longer have contact with the family members who may have had my records. The sleep specialist who diagnosed me 12 years ago has retired and their practice no longer exists. The sleep lab where I had testing done has closed that location.
I recently tracked down the facility network and was able to get my initial inconclusive overnight test from 2015. However, they cannot find my subsequent overnight and MSLT which was done shortly after and is what actually confirmed my diagnosis.
No other providers from that time (PCP, psychiatrist, etc.) have records either. I’m not sure how they have results from the first study and not the second.
At the time of diagnosis, I was trialed on Nuvigil, which didn’t work well for me, and I continued on Adderall (which I had already been taking for ADHD). After that, I didn’t really pursue further treatment due to lack of insurance/finances.
Fast forward to now, I finally have insurance again and saw a new sleep specialist with the hopes of finally trying Xywav. He told me that without the MSLT results, I would need to repeat testing for insurance purposes. I was quoted about $4.1k out of pocket due to my deductible, which is not something I can afford.
So right now I feel completely stuck. I have a legitimate prior diagnosis, but I’m missing the one test insurance wants and I can’t afford to repeat it. I was so relieved to finally have insurance again and try to find treatment after so long, and now I feel just as hopeless as I was before my diagnosis 12 years ago. I’m so tired of living like this.