@TippiLeigh - and you may not know for a very long time (which is actually great because it means you get a long time!)
@EricInLA, I too was dismissed, not only here, but also by my first neurologist. I felt ashamed, as though I was some sort of hypochondriac or drama queen.
This month is my four year anniversary. The U of I says I have ALS because of EMG. Mayo, who didn’t “see” the same results on my latest EMG there says, no, it’s PLS. The truth? I’ve been to a couple funerals in the past four years and some of healthy people - a surprise heart attack, a car accident.... Truth is, we’re all walking around with a diagnosis, some of us recognize we will die and others, who don’t carry a diagnosis live unaware... It gives us time to prepare,I suppose.
Like you, with young kids, it feels so heavy. We have eleven - the youngest four were 2, 3, 5, and 6 when I got the initial MND diagnosis.
Our society presses us for answers and likes labels but it can be anxiety producing for those of us in limbo. When I came to a point where I just did twice a year clinic and an annual reassessment, but otherwise lived life... it was less weight on me? I also think I needed to be more patient with me. I hated being in limbo.
Just some random thoughts and experiences in case they help.