PLEASE DONT READ IF SENSITIVE......Hi BB, so sorry that you are feeling so poorly. I'm a little confused by some of your information. Usually when someones blood work comes back elevated for MG, then they run other test to help confirm the diagnosis, one of them being an EMG, but most people that get an EMG get the results rite there on the spot. If they still have not provided you with the results, I would be making a phone call and be pushing for those results. I am not familiar enough with MG to say that if your blood work for it was elevated, then you defiantly have it, for all I know, there may be other things that can cause this elevation. But in most of what I've read, MG presents very commonly with very pronounced weakness in one or both eyelids, and blurred or double vision with drooping of one eyelid or both lids. Muscle weakness is big with MG, but usually has a distinctive pattern. Generally people with MG will wake up feeling great and as there activities increase, they will eventually crash out in the energy department. Something for an example of MG weakness is if you were to use a hammer, after several swings, your arm would give out, and you would be unable to pick the hammer back up, then you would rest your arm, and then be able to pick the hammer back up, but after only a swing or two, your arm would crash out again, and strength wouldnt return for several hours or the next day even. I dont hear this kind of weakness in your description. Twitching is also not common with MG. When twitching occurs with MG, it is commonly related to the medications used to treat MG, not MG itself.The leg pain you spoke about could very well be BFS, or age, or both. I do not agree, nor do I understand why your MD would just tell you to live with these symptoms. There are a few medications for people with BFS that can help with controlling the legs pain and some of the other symptoms that come along with it. Some people with BFS dont use the meds offered, but some have gotten relief with these meds, its your choice on that one. If you do have MG, it is very controllable. It is one of the very few of Neuro disease that is very treatable with several medication choices for you and your doctor to discuss. So I would push more to have that conversation with your docs.The falling issues are most likely not BFS related, although there are several people on here who speak of mild balance issues during the coarse of there illness with BFS, but these are mostly connected to issues with Vertigo. Falling with other symptoms of ALS are due to clinical weakness, and you would know if you had clinical weakness because your neuro would have picked up on it on your first neuro exam. Once again, if he did not discuss this with you then you need to push for that conversation as well. Remember, they are being paid by you or your insurance that you are paying for, to work for you, so ask those questions. It is your right to be an informed patient. If they say you are elevated for MG in your blood work, but you dont have it, then ask what are the other reasons why your blood work would be elevated. If they say you do have it, then tell them you want to begin discussing treatment options to control your symptoms and get some quality of life back. Some patients with MG can even have a surgical procedure done to remove their Thymus gland, and there symptoms go away completely. So there is no reason for anyone to tell you to just live with your symptoms, whether they are MG or something else.I hope you are able to get some answers and relief soon. Feel free to hang out here for support, this is a great group of people with a lot of knowledge and compassion here, so rest assured, you are not alone.Take CareRobynn
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