PCOS, Endometriosis, Hypothyroid, still unexplained symptoms
Posted: Sun Aug 30, 2009 6:15 pm
Hello!
Around two years ago I guess, I had some medical issues that were out of the ordinary enough for me to wonder if something bigger might be going on. When I looked into it, MS seemed like one diagnosis that would explain everything. A friend of mine did not know I had been very casually looking into it and upon hearing my symptoms said it sounded just like her mom with MS. It made me wonder, but it was never pursued.
I got passed from doctor to doctor and each added a new diagnosis, but no one considered an overarching understanding of why a seemingly healthy young woman was experiencing all of this. I misspoke; two offered explanations: one said the symptoms I was experiencing which clearly and directly correlated to the lab results he received must have been in my head so I might benefit from an antidepressant despite showing no signs of depression while one other said I was just stressed and hormonal. Needless to say, neither were my doctors for long. The rest would just tell me they saw something going on but couldn't explain it and so would refer me elsewhere.
I finally got what was supposed to be the AHA! diagnosis about 4 or 5 months ago, which was polycystic ovarian syndrome (which some speculate could be auto-immune). No one had tested me for it because I am thin, but once I was tested I clearly had it. Unfortunately, treating the PCOS created new problems. I was most recently diagnosed with endometriosis (considered an auto-immune disorder) as well. The two basically are treated with opposing hormonal therapies so that the normal means of treating one exacerbates the other.
That meant I was diagnosed with two and possibly three auto-immune disorders when you add in my Hashimoto's Thyroiditis, but it bothered me that everything still wasn't explained. I was going to a GI doctor complaining that things all seem to be grouped together in episodes and interrelated, but nothing I did seemed to really affect them. They just fade away about 6 months later never to be seen again, but after that new issues eventually develop instead. It went no where and endometriosis was supposed to explain the GI issues. PCOS was supposed to explain the neurological issues. The docs just don't deal with any issues that have resolved. I'd forgotten several, but they're coming back to me the more I read like the zappies in my head and neck I recall first going to the doctor over and being told they were muscle spasms in my neck but physical therapy telling me they were unlike anything they'd dealt with. I started looking into an overarching reason and was again drawn back into looking at MS.
I've been fascinated by the conversations concerning the possibility of insulin resistance (which is one theory for PCOS as well), of endocrine abnormalities (I saw something about growth hormone, which I showed abnormalities in along with abnormalities in numerous other lab tests which are still unexplained), of problems being exacerbated in the heat (which is clearly true for me and one of my diagnoses is directly related to that), about MS possibly not being an auto-immune disorder and so on.
I don't know if I have MS. I honestly hope I don't. I'm just trying to look into it enough to know what MS is so that I can discuss it with my doctors and properly advocate for myself, whatever it is I need.
I look forward to discussing with you!
Around two years ago I guess, I had some medical issues that were out of the ordinary enough for me to wonder if something bigger might be going on. When I looked into it, MS seemed like one diagnosis that would explain everything. A friend of mine did not know I had been very casually looking into it and upon hearing my symptoms said it sounded just like her mom with MS. It made me wonder, but it was never pursued.
I got passed from doctor to doctor and each added a new diagnosis, but no one considered an overarching understanding of why a seemingly healthy young woman was experiencing all of this. I misspoke; two offered explanations: one said the symptoms I was experiencing which clearly and directly correlated to the lab results he received must have been in my head so I might benefit from an antidepressant despite showing no signs of depression while one other said I was just stressed and hormonal. Needless to say, neither were my doctors for long. The rest would just tell me they saw something going on but couldn't explain it and so would refer me elsewhere.
I finally got what was supposed to be the AHA! diagnosis about 4 or 5 months ago, which was polycystic ovarian syndrome (which some speculate could be auto-immune). No one had tested me for it because I am thin, but once I was tested I clearly had it. Unfortunately, treating the PCOS created new problems. I was most recently diagnosed with endometriosis (considered an auto-immune disorder) as well. The two basically are treated with opposing hormonal therapies so that the normal means of treating one exacerbates the other.
That meant I was diagnosed with two and possibly three auto-immune disorders when you add in my Hashimoto's Thyroiditis, but it bothered me that everything still wasn't explained. I was going to a GI doctor complaining that things all seem to be grouped together in episodes and interrelated, but nothing I did seemed to really affect them. They just fade away about 6 months later never to be seen again, but after that new issues eventually develop instead. It went no where and endometriosis was supposed to explain the GI issues. PCOS was supposed to explain the neurological issues. The docs just don't deal with any issues that have resolved. I'd forgotten several, but they're coming back to me the more I read like the zappies in my head and neck I recall first going to the doctor over and being told they were muscle spasms in my neck but physical therapy telling me they were unlike anything they'd dealt with. I started looking into an overarching reason and was again drawn back into looking at MS.
I've been fascinated by the conversations concerning the possibility of insulin resistance (which is one theory for PCOS as well), of endocrine abnormalities (I saw something about growth hormone, which I showed abnormalities in along with abnormalities in numerous other lab tests which are still unexplained), of problems being exacerbated in the heat (which is clearly true for me and one of my diagnoses is directly related to that), about MS possibly not being an auto-immune disorder and so on.
I don't know if I have MS. I honestly hope I don't. I'm just trying to look into it enough to know what MS is so that I can discuss it with my doctors and properly advocate for myself, whatever it is I need.
I look forward to discussing with you!