1. Has he had a cpet?
2. Tilt table test?
3. Skin biopsy for sfn?
4. What was the CT of, cardiac, chest or head?
5. Has he had a spinal MRI, brain MRI?
Do not feel upset if Cognitive Behavior Therapy will be mentioned by one of your Providers as a treatment option while diagnostics are still being run and sought. If you get slighted by this idea alone, then you probably do need it.
I'm a 33 year old female and the symptoms you are describing are IDENTICAL to how my symptoms presented when I was 16. I ended up dropping out of high school in my junior year, at 17 years old, due to my inability to overcome my symptoms. After LOTS of tests I started doing my own research on sleep disorders because I was very tired during the day, but was also not sleeping well when I was asleep. I was finally diagnosed with Narcolepsy with cataplexy but my cataplexy symptoms have called down alot over the years.
My symptoms pre-diagnosis:
Had "spells" where I'd suddenly start to feel dizzy, my legs would give out, my vision would quickly fade out to blackness or like dark TV static even though my eyes were still open. My upper body, especially toward the end of the spells which usually only lasted a few minutes, would spasm or jerk, which kind of felt like it was mainly from the shoulders and I described it as feeling like my body was trying to reboot or something. About a year before I started having the above symptoms, I was experiencing heat palpitations that caused shortness of breath, fluttering in my chest, pain/pressure in my chest, very rapid pulse and lightheadedness,sometimes even fainted. I also had the butterfly rash and lots of stomach trouble like nausea and heartburn.
Wore a heart monitor for 12 weeks and was told my heart issues were caused by "inappropriate sinus tachycardia" and was told to increase my salt intake.
They tested thyroid, brain MRI, CT scans, blood tests, kidney and liver function were done, they started to act like I was making it up. After doing some research we went to see a sleep specialist instead of a general Neurologist. I had a Polysomnagram and the Multiple Sleep Latency Test (MSLT- this is the important one) done which confirmed beyond any doubt that I had Narcolepsy.
After recent health problems requiring blood tests, I had a positive ANA result and my doctor is referring me to a rheumatologist with the concern that I may also have Lupus or MS due to my symptoms during my most recent episode. It makes me wonder if there is a Narco-Lupus connection.
I'm relieved to see I'm not the only one whose symptoms weren't "by-the-book". My Neurologist said he's only ever had 1 other patient who had the syncope, heart issues, and temporary loss of vision and she was also in her teens when diagnosed. Makes me think that when it shows up at a younger age that the initial symptoms are different than if already in adulthood at first onset of symptoms. Wish someone would do a study...
No! I wasn't aware that those symptoms accompanied narcolepsy. Do you think that's something I should bring up with the cardiologist?
Has anyone considered Narcolepsy or a form of it?