An Observation

[leaflea]

Is it just me? or has anyone else noticed from reading (compulsively in recent weeks) this site as well as alsforums.com and other blogs written by folks with ALS ~~ that those of us with...assumed BFS or normal EMGS or diagnosed BFS...seem to have much much much much much higher levels of anxiety about ALS than those unfortunate folks who actually HAVE an ALS diagnosis?...and we seem to have it higher than they did even while they were in the process of being diagnosed? To me, this makes BFS and ALS even more distinct diseases with some shared symptoms. It seems to me that BFS is more of an anxiety based disorder, with the physical basis of it yet unknown (similar to depression with somewhat known chemical pinnings). I mean, people who have ALS and are...wheelchairbound or bedridden or unable to speak...generally seem to cope better with their symptoms, diagnosis, and life better than those of us with a very hopeful prognosis. They sleep better and function at higher levels than some of us paralyzed not by ALS, but by fear. Just an observation and something to think about. Carry on and have a wonderful weekend everyone.

[Anxious guy]

I don't go to those sites any longer, I haven't been since the start of my tongue twitching etc
Your right the people with BFS are mostly suffering with health anxiety due to the fears of BFS being something bad or the BFS itself brings on anxiety / depression etc by altering chemicals in our body.

I had a pretty depressing day today but I'm trying to turn it round for the evening, for some reason I'm kinda up and down !

[leaflea]

I don't say this with any kind of judgement. I am right in there with everyone. I also quit going to the other sites since having my EMG (two whole days ago). However, I was struck while reading them how calm everyone was except the section of alsforums.com they have designated to those of us who compulsively check our bodies for wasting etc. who are without any diagnosis. They call us "crazies" and don't seem to relate to the fear we have, as if they never had it at least in the intensity that we do even while in the stage of a probable or possible ALS diagnosis. ALS is a disease of the nervous system and as far as I can tell BSF is maybe a neuropsychiatric problem if not a psychiatric problem. I do suspect there is a biological basis to it, but it seems more like a mind/body thing. It mimicks a neurological problem and maybe that is why I feel as though my "nerves" are shot although my EMG tells a very different story. Again, I am reminded how many of us had a big stressor prior to having the symptoms. ALS people seem to be just going on with ordinary life when it happens, not stressed or recently stressed by anything.

[shell67]

Leaflea:

Did you ever find out what's causing that odd sensation in your abdomen? I'm curious, as I seem to have the same thing. Thanks!

-Michele

[leaflea]

Not officially. But I was working in the hospital ER once while it was going strong and told/showed one of the docs about it - this was after I had googled it. She called it a "fasiculation" and said it can happen on the abdomen wall and it is similar to having the hiccups. She seemed utterly unconcerned but I'm sure she could tell I was disconcerted. I told her it was driving me crazy. It has really settled down in the past month or so. I think it was a "hotspot" for about a month. It came and went and lasted an hour or so every few day. While I think the body wide twitching may have been happening a while (weeks or months) before I really noticed, it was that one that grabbed my attention and prompted me to google, what the heck... Really, I thought it was rather funny at first. Obviously, my mirth turned to horror. Hope yours settles down soon.

[RGB]

assumed BFS or normal EMGS or diagnosed BFS...seem to have much much much much much higher levels of anxiety about ALS than those unfortunate folks who actually HAVE an ALS diagnosis?...and we seem to have it higher than they did even while they were in the process of being diagnosed?

That's an interesting observation but a cautionary comment.... You are basing the degree of anxiety on the people who were sufficiently bothered by their twitches to go and see their GP AND some of those only got a neurologist appointment/EMG/etc. because they were anxious and wouldn't go away AND they were sufficiently anxious to join this forum AND they are sufficiently anxious to be regular posters here.

What you read here is an anxious subset of all twitchers. The danger is that this reinforces the idea that it is 'normal' and 'justified' to be anxious and, based on all the best evidence, there is no reason to be (not saying that is easy for some).

RGB

[leaflea]

Yes, RGB, you are right. I thought of that. There are probably tons and tons more BFS people who do not have the high anxiety level. However, I do observe a high level of anxiety amongst many of us here. I wonder how many posters on this site also are posters on the alsforums.com. "is this ALS" threads. I can say I have not.

[TwitchyMark]

In some cases there might simply be more anxiety over waiting for the other shoe to drop... or the next shoe... as BFS seems to have many legs. The unknown vs. the known. But I think many people who suddenly present with undetermined clinical weakness are just as anxious as any BFS'er. Health anxiety doesn't discriminate.