Well, I’m glad my posts at least connected with how you are feeling.

I’ve been meaning to report back more often with “progress” and current condition.

I’m at the 18 month mark now, and I feel like I’m basically at an overall steady state. Lots of weekly fluctuations up and down with some being almost perfect and some being pretty nasty. I’m at a down point now with my legs buzzing non stop, other large muscles popping on and off a few times through the day, tinnitus going, and bad sleep from the muscles working which causes sweating and restlessness.

One interesting thing (minor in the scope of things except it adds to the issue of not good sleep) is that I notice on bad weeks I have non-stop CRAZY dreams. Just bizarre stuff. When I’m feeling better I almost never dream.

The good news is, I’m still active and walking 7-20 miles per week thanks to golf.

Mornings are tough due to crappy sleep, and I always feel like absolute crap when I wake up. Aching and burning skin, leg muscle aches. Just like a got beat up while sleeping.

Knock on wood, none of the nastier symptoms have been back lately (more violet night tremors; tremors in the chest, head, or throat; globus; challenging vocal cord control; weak arm/hand strength).

I have not altered my 3x300/day gabapentin. Vitamin levels are all strong in recent blood work, but I take the mag/calc since it is fine for me anyway.

Personally hoping that I start making progress again towards further healing, but who knows.

For you, hope you make progress soon. It’s a tough, wild ride. Do NOT wait over a year to see a neuro. You at least need the visit for your own mental health. Not sure what area you are in but don’t give up with finding an appointment. Worst case, like I told in my history, go to a good hospital’s ER and get in front of a neuro if you reach a breaking point like I did. I simply couldn’t go on, so I made the choice to do that. In my case, I HAD an active neuro relationship, but he admitted he was out of ways to help and encouraged me to see another.

Best of luck to all.