I’m 32 years old. At two weeks I was diagnosed with congenital hypothyroidism. I had no thyroid. I was born without it. I know it’s hard to believe. But it’s true. So I have been on synthroid/levothyroxine ever since. Fast forward to today. I’ve been having chronic migraines for 4 years with up to 15-20 migraines a month. My neurologist declined to order an mri even though I asked for it. Which when you have skull splitting headaches is disconcerting because during pain time your mind goes to dark places imagining tumors and stuff. She said first of all you can’t see migraine on an MRI. I retorted no but you can see other things that are more serious and require quick action. She said that since I’ve been having migraines my entire life since puberty, it’s common to have an increase. If I had never had a migraine in my life and all of a sudden I was feeling this bad, it would concern her. I accepted this at first. The next time I saw her I asked her again and she declined again. after I’d tried Topamax as a daily preventative and stopped due to side effects, she prescribed Effexor XR, that failed miserably. I had the most awful side effects and when she told me to stop I had even worse withdrawal. I was desperate and depressed(withdrawal from Effexor) I was considering giving up on my fight against migraines and seeing if I could qualify for disability. Then I found a new dr. The first thing he did was listen and he looked me in the eye and talked to me and did an exam and made treatment suggestions (Botox waiting on approval.) and then he ordered an MRI to rule out tumors or other issues. I went yesterday to get my results. Poor guy was so nervous because he had assured me that it would be clean and it came back and I have a partially empty sella and my pituitary gland is flattened and not visible in the MRI. So I did research. From what I’m reading, (making an appointment with a neurosurgeon. I don’t make a habit of self diagnosing) it’s a build up of pressure of cerebral spinal fluid that has leaked into the area where the pituitary gland sits and the pressure flattened the pituitary and can lead to reduced function in the pituitary gland. It’s called pseudo tumor cerebri. Because it mimics the effects of a tumor but it’s not a tumor. Has anyone had this diagnosis? What treatments have been successful.
A shunt should fix it, have them order an MRA to confirm.
Being born without body parts or with extra parts is not as uncommon as one may think. It sounds like this neurologist is much better. Never be afraid to fire your inept Dr. And hire a better one, it may save your life. Get this procedure taken care of, fluid backing up on the brain isn't good but is easily rectified. You're in my prayers.
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