Hi Elaine,

I am sorry you are dealing with more challenges.

It's really difficult to discern just what is going on for you.

I am happy to share and I hope it helps in some way:

I have had a lot of very strange stuff go on and have ended up in the ER, repeatedly, with severe neuromuscular signs/symptoms, which have needed immediate intervention. Now this is a conundrum because although I needed intervention, nobody could agree upon the intervention approach, as there were many conflicted opinions about just what was going on, even though they could readily observe the severe and relentless condition right before their eyes. The origins/causes/etiologies of some of the neurological conditions are difficult to discern without further investigation.

In addition to seizure activity, there are some forms of dyskinesias which act in similar ways as you have mentioned. There are likely at least a few conditions which may give you similar signs/symptoms.

As I have read more and more about various types of neurological, neuromuscular and/or movement disorders, I realize more and more just how complicated this all can be. My signs/symptoms could have fit any of several neurological/neuromuscular or movement disorder conditions.
I have needed a great deal of testing in order to get closer to the truth about what is going on in my case.

I suspect you may find the same and only a very astute neurologist will be able to further discern the exact nature of these episodes you describe.

I know I do not enjoy going to my neurologist with new signs/symptoms. I often feel like: "What now?" I feel so very exasperated at times.
Yet, it's important I share more of whatever goes on. It's the only way we can narrow down what's truly happening.

I understand your feeling that "it's always something" and am sorry that, you, too, have had to live with challenges which many cause us to feel this way at times.

I hope you will share with your neurologist, just to be as safe, as healthy, as possible.

I do enjoy your avatar picture, such a radiant smile!

With Love and Concern,
DejaVu