Did they test your melatonin, your pituitary hormones and more importantly, did they do it at the right times, and no lab error?
Did you get copies of all your testing? I found, sadly, that some docs told me I was *fine, just fine* but I got my tests and found er, I was not! Pineal cysts are going to mess with the sleep - so they need to test more on that - as well it is right next to the pituitary and the optic nerves. Get copies of everything.
I think that if you had to pick two-
Go with the neuroendocrinologist and neurosurgeon. If you have trouble finding the right type look into pituitary centers at large university affiliated medical centers like UCLA in Los Angeles or UCSF in San Francisco or Brigham and Women's in Boston.
I've consulted so many doctors so far (-- namely, a rheumatologist, two physiatrists, a neurologist, a neuropsychologist, a respirologist and sleep specialist, a gastroenterologist, an internist and an opthamologist). Apparently all my blood tests are fine, so no hormones are apparently "out of whack".
I haven't seen a neurosurgeon or a neuroopthamologist seeing as how the neurologist said that my examination was normal and referred me to an internist rather than to another neurological specialist. Think I should still try to consult a neurosurgeon, neuroopthamologist and/or a neuroendocrinologist?
You may want to see a neuro-endo for eval - they may be able to test you better. They can be treated. If you look around, lots of people post here about them, and it seems to be a frustrating issue! Horsey is totally right about the sleep - so you are symptomatic and they should take some action.
Forgot to ask if you have seen a neuroopthamologist to have your eyes evaluated?
Hi-
Pineal cysts tend to be discounted as causing problems. But sleep disturbances, headaches, elevated brain pressure, seizures and a host of neurological things can happen because of them depending on the size and what they are pushing on.
The pineal gland makes melatonin which is responsible for your circadian rhythm. So I would think that this and the fatigue is connected to the pineal gland cyst.
The spasms maybe particularly the ones in the eyes might be connected to the cyst.
I don't know if the digestive stuff could be connected to it.
Have you consulted with a neurosurgeon? Where have you gone for medical advice regarding the bugger? I am a mere mortal not a doctor.
Horselip