I somehow lost a big introductory post, and I could cry. I will just be brief, as I have some questions I would like to ask. Diagnosed with an autoimmune disease age 20. Also with hypothyroidism. Fast forward 30 years and a life of exhaustion, here I am. I believe they gave me the wrong diagnosis, scleroderma. All I had in common with my scleroderma friends was chewing, swallowing/choking problems, and feeling death cold. Whilst they found relief in hot weather, I felt worse. I have all the symptoms of MG, right down to the crooked smile, droopy eye, blurred and double vision, muscle weakness to point of falling over, dropping things etc. Needed esophagus surgically stretched regularly, suffered seizures, there are a lot more similarities. I have a new GP, who is young and refreshing. He said 3 magic words, "I believe you" and we went to work doing different blood tests. After reading so many blogs about thyroid problems, I believed all my problems lay there. I was negative for hashimotos and graves, ultrasound showed normal looking thyroid gland. He referred me to an endo, as I was displaying symptoms of thyrotoxicosis. Very shakey, like adrenaline surging thru me. Under range TSH, High T4, Low/med T3. Maybe a conversion problem, but I stopped the thyroxine. My Ana is 1/2560. Since a motorbike accident in April, I have never been the same. Bed ridden. No strength to do much, my dear husband has been amazing. Just getting dressed exhausts me. Breathing is difficult. Talking is too. Sometimes I can't form the sound to make a word. Other times, I have to not talk just so I can focus on breathing. My doctor has been on holidays, but I see him this Wednesday. I only read about MG last week. I read about breathing emergency, so saw the other doctor at my clinic. OMG, he was so rude. Told me to stop reading the internet. Told me nothing wrong with my breathing, yet I was visibly gasping, and really struggling to talk. He then thought I was just trying to create a law suit against the doctors who diagnosed me with scleroderma. WTF? I was so focused on my breathing, I didn't have the extra energy to call him a jerk. I came home, am kindly refusing visitors, cos I can't focus on talking with them, and they just don't understand. They think if they take me out it will be good for me, and I know they mean well, but I truly can't cope. I will ask my doctor to do the 3 antibody tests, can a GP request these? Also, if anyone here is from Australia, do they know if these tests can be done in Adelaide and how long until results? I hope I get a positive blood result. I need a diagnosis and treatment fast. I'm also worried about low oxygen in blood levels. Dizzy and vague, and weird feeling all over like tissues are starving. What would I look for? My circulation has always been bad. My skin on legs is mottly blue. Raynauds in hands and feet. Tiny red spots on face, not raised or itchy. Life long sinus issues. I think I have a silicon farm in right nostril, it's horrible. Nasal voice. I do B12 shots and vit D sups.
Wow this has gotten long. Thanks so much for reading.