Hello,

I am seeing @martinaston ’s messages fine. I am happy to chat via private message if it helps, but also encourage sharing experiences in this public forum in case it helps others down the line.

I will sent a return message shortly.

Just as a public update, I’m at the two year mark of the onset of symptoms now. Still using 300x3 gabapentin. Also still doing calcium and magnesium supplement. Neuro said that can’t hurt even though it might not help.

Nothing has gotten worse over the past 6-9 months and I would say overall slow improvement with sort of a plateau the last 3-4 months.

I still am able to do most anything, physically. I walked golfing most weeks and am planning on some skiing for the winter.

My legs and specifically calves and thighs still pop and buzz most of the time, sometimes visible Fasciculations and sometimes just internal buzz.

It is still often worse laying down at night after a day of exercise.

For no known reason, I have a few days every once in a while that are much worse, and then can have a week or two where I actually forget about it, because it’s so mild. I am thankful for those times!

Sleep is sometimes (~30% of nights) impaired by the condition, whether it is the buzzing itself or sweating caused by the nerves being off kilter.

I also still notice occasional Reneau’s in my fingers when it is under 40°, even with gloves. (That started only after I had BFS begin). Speaking with my docs, they say it makes sense because the nerves are getting wrong messages. Similar to the legs sweating. It is not a clinical circulation issue (circulation is just fine).

Globus has only returned a few times, knock on wood. It lasts for 3-5 days when it pops up, and then thankfully goes away.

Tinnitus has been improved notably.

Vocal/chest tremors in the night are also rare and milder now. 5-7 times in the past 6 months probably.

Nothing much else I can think of for now.