Originally Posted by DejaVu

Hi Mere!

Once the heat hits me and I am a neuro. mess, it can take several hours to a few days of being "cool" to straighten out again. In the meantime, I am good for nothing. Once the heat/humidity hits my nervous system, I am truly incapacitated.

The last time I was working on strengthening, the physical therapist would put ice on my neck and spine as soon as I was finished, to try to reduce any temp increase.

Some summers have been worse than others. They have all been a challenge. I seem to get better and we also see healing in the sfn biopsies, etc. I am repeatedly "hit" with acute exacerbations, which include frank nerve damage. Too often, there has been a medication involved. Now that we are on to that and my newest neuro has seen it for himself, we may get somewhere? Yet, it is also well over 20 years later and I now have deficits that do not seem to "heal." I haven't given up; yet, I do realize that after awhile, there will be some chronic deficits.

Do sudden loud sounds really startle you?
Sometimes, I feel like I am going to drop to the floor.
I suddenly get very weak and think I am going to hit the floor!
It vibrates through the core of my being.

It is all still all a "mystery." Like so many other stories here.

Take care, Mere!