This is a great question!
Yes, I had hoped for an MS diagnosis when I was at my worst (both with my symptom severity and with my mental anguish of not knowing what in the world was going on with my body, and having no answers to boot). I remember thinking, "well if it's MS, then at least I will know what's responsible for my symptoms....and MS certainly isn't considered as bad of a sentence as it used to me given all the new meds". (Of course, objectively, I know that each case is unique...but at the time, those were my thoughts. It was like MS was a best-case scenario because I just couldn't comprehend that my twitches and other symptoms were nothing to be concerned about).
Of course, tests for MS and ALS all came back negative (as my doctors assured me before the tests that they would).
The hardest part of BFS is accepting it as a benign condition and truly believing it isn't related, nor will it ever evolve into, anything more sinister. If, down the road of life, some of us do become diagnosed with MS, Parkinsons, ALS or other strange neuro ailment, we can be certain would never have been due to our BFS. (The only single exception to this might be for lyme....and lyme would be the 'original' disease process, not BFS).
Good discussion. It helps keep the perspective in check!
Thankfully there IS a name for our symptoms: Benign fasiculations or Benign Fasiculation syndrome (however your doc diagnoses it). I think, if we studied medicine, we'd find that there are many diagnoses like these that are made, not through falling under the umbrella of concrete clinical/labratory test results, but simply by not falling under any specific category at all. It's hard to accept when there's no true test that reveals: 'Ah-hah, this is BFS'. Having to go through the process of 'let's eliminate the worst-case scenarios' really stinks. However, I bet there are tons of diagnoses (many benign like ours) that are made this way. I have learned to accept it and stop questioning...but it did take time.
Amy
