Pineal Cyst: What symptoms led to your diagnosis?

Hi Everyone,

I wanted to share my story. I currently and diagnosed with a pineal cyst that is 16mm. I was written off by ever neurologist that I have seen that my symptoms and migraines couldn’t be from my cyst. After 26yrs of being in constant pain I was finally referred to Mayo. The neurologist I saw started to write off the cyst like everyone else. I pushed and they did a new MRI scan everything except my cyst is normal. My previous scan the cyst was 14mm so it has grown. I now have a consultation on Monday with a neurosurgeon at Mayo. I had to fight and advocate for myself and hoping this surgeon will agree to remove the cyst.

That’s truly amazing that he does this. What’s his name? Please msg me! I need to fly to Texas for surgery it seems.

I'm 55 and male and I've not had melatonin measured. Given what the pineal gland is responsible for though thay makes sense.

I wish people would indicate their sex and age. Could be low melatonin. There are other reasons for poor sleep. I have found myself that low vitamin D (that only sunlight or tanning works in Buffalo, NY in the middle of winter-Vit D pills do not work for this issue. Another cause is low progesterone especially found in perimenopause/menopausal women.

I want to add that you can do baseline blood and saliva tests yourself for the pituitary testing for growth hormone hormone, testosterone, etc. However at the Strong hospital my husband twice went to the outpatient clinic there where they hooked him up to an IV and injected a solution, then periodically throughout the day drew blood. So one cannot do all of the blood testing yourself. Do you have a fax number if I find further information on testing? Also Strong/pituitary clinic requires a referral from another doctor.

google: Life Extension hormone panels female (or male). What you want is hormone tests especially for the ovaries, thyroid, and pituitary. If you want I can check with my husband for the pituitary hormones. Most doctors will balk at taking the pituitary hormones because they think they/doctors are the right hand of God and know everything. My husband goes to the pituitary clinic at Strong Hospital, Rochester NY. He see's an endocrinologist and neurologist on the same appointment and he likes them a lot. Make sure if you are female and still having a cycle that the female hormone tests are on day 17 - 21 of your cycle. This means day 1 starts as the first day of the menses. I live in Buffalo, NY. If you want I can give you a phone number to call me.

I'm happy to, which ones though. So far just checking thyroid hormone levels

Check your hormone levels.

Those were also my original symptoms upon vaccination late summer 2021. On one visit she did say they were not typical MS symptoms. The MS diagnosis happened after a spinal tap contained oligoclonal bands ie. Elevated proteins. What confuses it all are a few bulging discs. The spinal cord lesions are in close proximity to a bulging disc. I have wondered if a disc issue and poor posture moments can cause those vibrations. My most recent MRIs were only a week ago so I will have a follow up before November is done and I will ask more about the cyst. I do have trouble sleeping and do wonder if that's a melatonin deficiency.

Hi, @saints2003, and welcome to Mayo Clinic Connect. You've had to deal with a number of health challenges.

Here's one article I thought might interest you from a Mayo Clinic neurologist on pineal gland cysts https://newsnetwork.mayoclinic.org/discussion/pineal-gland-cysts-are-common-but-dont-normally-cause-headaches/

I'm wondering what your doctor has said about these vibrations you have experienced in your face and hands, and which now seem more like a seizure?