Quote:
Originally Posted by AnnieB3
Am I responsible for this quandry? I questioned whether you had fatigable weakness that was demonstrated by a clinical exam - which obviously you have had. And your SFEMG demonstrates that as well.
What I was trying to point out in my other post was that MG has weakness that clearly fatigues upon exertion or repetitive activity. Like Alice said, paraphrasingly, "Do this, that happens."
I asked the question because you can have muscle weakness from a fluctuating thyroid condition or electrolytes being off but it won't specifically be related to an activity. I certainly didn't ask in order to make you doubt the basics.
It's possible for you to have BOTH.
With MG, however, you have to see it in "action" in order to know how it is behaving. Like Alice said too, just sitting in an exam room might not show a doctor how weak you are. Except for that time you pushed for a longer period of time and got weaker. The best neuros put a suspected MG patient through a veritable workout.
I'm sorry if I added to your questions instead of helping.
Annie
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Annie,
I personally think what you did is great. When trying to understand you have to ask questions and those lead to further questions and brain storming.
It obviously create an uneasy feeling (because we all feel better walking on solid ground) but this is the way we learn and gain a better and more solid understanding eventually.
I can fully understand Abby's concerns. I know that I stopped worrying about what my illness is (autoimmune or congenital) only after I decided (together with my neurologist) that it is not going to make any difference with regards to management of my illness. And also knowing that with the currently available tools I will probably not be able to get a clear answer any how.
Admittedly, having MuSK antibodies (even if those were not detected with the usual tests) and gradually learning that although my illness is not "classical MG" it is quite classical MuSK MG did make things somewhat easier for me. (it did not make my illness any "nicer" but it did help me feel more comfortable about it and knowing what to expect/hoping for better treatments which will be developed eventually etc.).
I keep on saying that the name of the illness doesn't really matter. But, it reality this is not entirely so. We live in a world of names and titles and life is easier with them. Furthermore, if is quite understandable that if you take treatment (with potential side effects) you want to know it is justified.
Abby,
I do hope you will eventually find better answers that will put you at ease. Sometimes you need time and patience, until the right test is developed or more experience is gained with your type of illness. (mostly if it is very rare).
Practically, Clearly you do not have classical AchR MG, and you also don't seem to be typical MuSK MG. But, there are still antibodies which may be found in the future so autoimmune MG is a viable possibility.
You seem to have a good response to immunomodulatory treatment (even if you are not among those who are fortunate enough to have a full remission) and also have other autoimmune disease (and a family history), which makes it more likely that you have another autoimmune and not a congenital disease. So, I think that at this point you should be content with that. (even if it is not perfect).
It is good to always keep in the back of your mind other options, but don't drive yourself crazy about it.
It also sounds that you have a good, sensible and caring neurologist you can discuss things with.
I personally think that it is more likely that an elderly aunt had a minor stroke than suddenly developed minor signs of congenital myasthenia.
If fact, my neurological told me that even in an elderly patient with known MS they would first think of a stroke, if he/she suddenly presents with an acute event during a stable period.