Rockwell Hello
I will try to explain it all.
Three years ago I had severe hyperthyroidism , Grave's Disease. I let it go until I could barely walk before I saw a doctor. It was shortly after that the cramps and fascics started. I was sent to a neurologist who did tests and gave me a positive dx of ALS. I knew nothing of ALS at the time and being in shock I didn't ask the right questions other than "Are You Sure?" She was sure. Time went on and some terrible things happened in my private life and I was still not showing any signs of weakness or wasting. I convinced myself that I had BFS and that she made a mistake. A mistake that hurt me and my entire family. I hold no grudge, she believed she was right. I called there a few times these past three years to try to find what made her think I had it and she was always unavailable.
A few months ago I broke my ankle while standing up, when it happened the second time it hit me full force that I was told I had ALS, this must be it. I asked my GP to find me a good neuro. He said I seemed to have strong muscles but he also had a copy of the original tests in his hand. He said according to those tests I had ALS, the slowest moving he ever heard of. He set up an appointment to do the tests himself. They were done yesterday, they were perfect! Cramping and fascics were evedent but no denervation at all. So it was either the thyroid disease or the test results were just plain wrong the first time around. I have just gotten in touch with an endrocinologist and he said thyroid disease could possibly show nerve damage but only the first year. That would be the only explaination that makes any sense.
I do not and never did have any signs of atrophy, wasting, the weakness in my legs was definately a result of being hyperthyroid and that has long since been corrected. My foot giving way when I stood up is most likely due to bad circulation and my foot falling asleep because it is strong and normal. So I have BCFS like I thought all along.
I don't want to scare or confuse anyone this is just what I have gone through. We all worry ourselves sick. Even slow progressing ALS patients have at least one body part that no longer functions. In ALS fascics and cramping are seen after wasting not before. If you are worried to the point of feeling sick you need to see a GOOD NEURO to put your mind at ease once and for all. ALS is a very rare disease. My new neuro explained everything as he was doing the tests, told me step by step what he was seeing and not seeing quite the opposite of the original doctor. I walked out of there yesterday fully confident that I was okay.
