It started with an injury I had several years ago where the philtrum column (the tissue that connects the nose to the upper lip) broke. I had drugs in my system at the time and that would explain why I didn’t go to the hospital until the next morning.The doctor that saw me had a hard time understanding what happened because remarkably the injury overnight partially healed itself. I say partially because cosmetically my upper lip and area under my nose had changed shape. After a neurological exam I was sent home .
Almost immediately I started to feel tissue spasms at the site of the injury and eventually all over my body. It was subtle at first but eventually I started to lose tissue everywhere- my face- my body- my genitals- my arms- everywhere. I got smaller everywhere you can imagine- my lips- my face-the size of my head- everywhere. These changes didn’t happen overnight..they happened over a period of a couple years. It’s as if vey slowly the mucous membranes in my face were breaking down.
I went back to a couple doctors at the beginning of all this but was dismissed. My story sounded too incredible.I did not have a family doctor at the time who would have had a frame of reference to compare what was happening to me to.
So I gave up for 4 years. And symptoms kept on racking up- Out of nowhere I started to get really fatigued, gained stomach weight and I lost muscle mass everywhere.
I figured I was going to have to try to find out for myself what was happening and the connection between my bizarre incredible symptoms and what appeared to be hormonal symptoms.
Eventually I came across what I believed was responsible for the hormonal problems- the pituitary gland. I went to an endocrinologist and told him my whole story only again to be blown off.
It was pretty clear to me that I was just going to have to describe only my hormonal symptoms and then try to tie that to what else was happening. So I went to another endocrinologist and sure enough after a couple months of testing and testing I was diagnosed with hypopituitarism with deficiencies in growth hormone and testosterone. Hypopituitarism is when the pituitatary gland becomes damaged from either a tumor or unknown reasons.
Those were welcomed diagnoses but still didn’t explain everything else that was happening. After 6 months of treatment I no longer had the fatigue and my libido came back. But something else happened…my other symptoms started to speed up.
Looking over the literature that came with the growth hormone I read the words – enhances immune system.
Then something clicked. It was my immune system that was attacking itself all along. And if my immune system had indeed turned on itself then GH would only make it stronger to attack itself.
More research revealed that the part of the pituitary that secretes growth hormone and testosterone is made of epithelium tissue . The initial injury happened to epithelium tissue. I am now convinced that the initial injury caused some auto-immune dysfunction that set off a chain of events where my immune system started attacking healthy epithelium tissue. My body can’t replicate epithelium tissue at the rate it is destroying it and that is what is causing such incredible symptoms.
To treat this I would need to take immunosuppressants to suppress the immune system. But before that I would need a doctor to actually listen and help me. I don’t know whether to go back to some of the doctors I have seen already that dismissed me or try fresh with new doctors and explain everything I now know that has happened and why.
I’m unsure where to go from here. After having so many doctors dimiss me I’m going to have to get over that phobia. What kind of doctor do I see? An immunologist? I need to take that next big step back to normalcy or whatever I can have now of a normal life.
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