I found out I had a Chiari malformation in 2001. Suddenly my entire life made sense. I never knew that there was anything different about me, I just always wondered why other people could do things without getting severe headaches, dizziness, or blacking out. I would watch people dance and jerk their heads around and my head would start hurting just watching them. Getting that diagnosis was a relief. It really didn't change my life at all because I had adapted myself to all of the symptoms and knew what to avoid.
However, I had lung surgery in 2005. Within two months I was diagnosed with Hashimoto's thyroiditis and then my entire life began to unravel. Since 2005 I have seen doctor after doctor after doctor and, even though some are willing, not one is able to help me. I saw in some discussions here that a few of you have had the exact same symptoms as I have had since 2005. I am to the point that if another doctor says "I want to help you, but there's nothing I can do", well I don't know what I'll do.
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My major complaints are: My body temperature cannot be regulated. Some days my temperature is 96.2 and the next day it is 101. My blood pressure has always been normal. Suddenly it is too high. I cannot exert myself or engage in any activity without my head and face becoming drenched. Then I start shaking. Sometimes it takes up to 45 minutes for it to stop. While my head is being soaked with sweat, the rest of my body is freezing. My potassium level has dropped dangerously low and my Vitamin D level is also too low. I have difficulty swallowing, especially potatoes (any kind). I have no appetite, but can't lose weight. My sleep is the absolute worst symptom of all. I CANNOT wake up. I was finally given Provigil again, after years of insurance denial, and that helps a little bit. I now have sleep apnea also.
I know that something happened during my lung surgery in 2005 and I believe it was the position of my head during the surgery. The anesthesiologist looked at my MRI prior to the surgery to see if the Chiari would be a problem. He thought I would be fine. I think that because of the Chiari too much pressure was put on the pituitary gland and/or hypothalamus and caused some kind of disruption in their function. How do I find out if this happened? There are so many other symptoms also, but I have discussed the ones I can think of now. Oh yes, my memory is also a problem, and finding words in my brain that should be so easy becomes impossible. I have had numerous blood tests, X-rays, MRI's, CT scans, echocardiograms, nerve block, video swallow, bone densities, and psychiatric evaluations. Every time I see my endocrinologist, I am told to to talk to my psychiatrist or neurologist. This is definitely an endocrine problem. Are there any doctors who can put all of these pieces together to get a diagnosis? I want to go on "Mystery Diagnosis", but you need a diagnosis for that. Please, can anyone help me?