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| Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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10-17-2012, 10:34 AM
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Junior Member
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The internet is a funny place. I feel like I really know all of you, but you don’t know me! I am a 35 year old mother of three. I was formally diagnosed (I think!) with myasthenia gravis in March 2011. Let me explain…
About four years ago, I knew something was wrong. Very very wrong. I would fall asleep frequently, and was always tired- really, really, tired. My hormones were all over the place. Honestly? I was afraid I was losing my mind. It was very scary. My husband finally and very literally dragged me into an endocrinologist and begged for an appointment. He came with me and essentially was my mouth piece describing symptoms and conversing with the doctor as I could not remember anything and was so confused all the time. Testing confirmed Hashimoto’s and hypothyroidism. I started on levoxyl and later switched to naturethroid (bio similar to Armor). It really took about a year to get my dosage perfect, followed by a really great year. Sometime in the fall of 2010 my vision went completely haywire. Now I know it was double vision, but at the time I was crazy frustrated trying to figure out what was wrong. I begged my endo to increase my thyroid meds. He refused as my levels were where they should be. I remember crying to him that something was so wrong. Somewhere in the course of that conversation, something I said made him think of mg (bless him). He excused himself to refer to some literature and came back and told me he wanted to run some tests, but that it was a long shot. My tests came back with high antibodies (although at the moment I can’t remember which ones) and he referred me to a neurologist. After an exam and a look at the blood work, the neuro confirmed mg, wrote me a script for mestinon, sent me for a ct scan (no thymoma), and referred me to Dr. Howard (April 2011) for a second opinion on thymectomy. I went to see Dr. Howard and he ordered an emg? Sfemg? Can’t remember. Here is where you all will think I am off my rocker: my family was moving from the east coast to north Texas. I canceled the test. I didn’t fill the mestinon script.The stress of that test, moving from a community I still miss very dearly, selling our house, buying a house, switching schools for our kids etc.- I couldn’t do it. I’m almost done- I promise! I found myself in a new area last summer (July 2011) and all of my mg symptoms were extreme. I was falling, double vision, severe ptosis, too weak to get dressed, any activity (like a shower) took at least an hour to recover from, you all know what I am referring to. I was overwhelmed with my responsibilities and my inability to accomplish them. I was scared out of my mind to take immunosuppressants or steroids. Those side effects scare the crud out of me! After a lot of thought and prayer I decided to see a chiropractor/nutritionist. I want a cure! I will spare the details unless someone is interested, but I find myself 15 months later seeking recommendations for an endocrinologist and neurologist in the north DFW area. I am hoping someone here can refer me to a very patient (I’m scared enough to put things off ya’ll! Sitting at home all day everyday unable to contribute to my family= awful. Cancer, diabetes= scary, so scary.) neurologist. I’m very interested in taking things slow but I’d really like to feel like a person again. |
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