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Pineal cyst = medical mystery?

I have a strange set of symptoms and doctors cannot seem to find one underlying cause that would explain these symptoms. Could it be possible for a pineal cyst (that was detected on an MRI six months ago) to cause most or all the following symptoms?

Symptoms:
- Raynaud's disease
- Severely increased daytime sleepiness and fatigue (diagnosed with atypical narcolepsy/idiopathic hypersomnolence and currently treated with Xyrem)
- Joint pain
- Loss of appetite (currently helped with Prevacid)
- Painful digestion (currently treated with Prevacid)
- Acid reflux (currently treated with Prevacid)
- Random muscle spasms (twitch-like spasms that have occurred in my eyes, stomach, back, legs and arms so far)
- Numbness (which has occurred in my right foot and right arm so far)
- Difficulty looking upwards

Blood tests, gastroscopy, small bowel study and lower body EMG results are all within the normal limits. Could these symptoms be due to a benign pineal cyst? Any other ideas?

Thank you in advance...
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Avatar universal
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.
Helpful - 0
596605 tn?1369946627
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.
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Avatar universal
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?
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Avatar universal
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.
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596605 tn?1369946627
Forgot to ask if you have seen a neuroopthamologist to have your eyes evaluated?
Helpful - 0
596605 tn?1369946627
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
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