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Pineal Cyst: What symptoms led to your diagnosis?
Brain Tumor | Last Active: 4 days ago | Replies (42)Comment receiving replies
Last year I had an MRI due to my diagnosis of non-24 hour sleep-wake disorder and a "narrow visual field". They found a "T2 hyperintense, peripherally enhancing enhancing lesion in the region of the pineal gland measuring 8 mm (8:15)". My doctor at that time considered this an incidental finding.
My current sleep neurologist thinks it actually may be related to my non-24 (sighted). Tests like DLMO and urine melatonin testing supposedly can help determine this (and help treat non-24 in general) but the only company doing DLMO for clinical purposes has stopped doing so recently.
I don't know what to do with this information. I may not be able to get the testing because it is unavailable in a clinical setting and even if I knew that the pineal cyst was the cause, I don't know if there's anything that could be done (other than possibly using a beta blocker and relying only on exogenous melatonin according to my doctor).
Replies to "Last year I had an MRI due to my diagnosis of non-24 hour sleep-wake disorder and..."
Hello @non242021 and welcome to Mayo Clinic Connect. I understand you feeling the need to pursue the incidental finding of the pineal cyst now that you know it is there. That said, if the testing is unavailable and the prognosis wouldn't do more than confirm, because as you said, there may not be anything more that could be done, it seems somewhat futile.
If the main symptoms from your sleep disorder lead you to pursue diagnostic testing, I wonder if you don't return to your original path. Either that, or perhaps you might be considering a second opinion regarding the origin of the cyst?
If the sleep aspect is still your greatest concern, I'd like to invite you to join the Sleep Health Support Group here: https://connect.mayoclinic.org/group/sleep-health/
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Also, due to the covid emergency telehealth rules expiring, I will no longer be able to see my current doctor without travelling from NC to Illinois. Given that nobody in my area seems to *really* understand non-24, this is very concerning.
Although my doctor did say they are willing to coordinate with and consult for any doctor that can see me in-state and see me in Illinois when necessary. I'm sure many others are dealing with this.