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A few concerning questions regarding BFS and ALS fear

PostPosted: May 9th, 2014, 12:29 pm
by mjd83
Hello all.

I'll briefly introduce myself. 31, male, iraq veteran who has had a concussion or two back in high school. (I include the last two details because supposedly it elevates my risk for ALS).

I won't rehash my story in detail since I've already done that on the general anxiety forum and received some pretty reasurring answers from there. Needless to say there are a few questions that I wanted to ask in a less GA and more BFS specific forum.

First, a brief background of my worries (summarized briefly)
A.suffering from a several month bout of fatigue and slight exercise intolerance, and feeling of weakness above both knee caps

B. Inevitable "muscle weakness" search in google brings up you know what

C. Became concerned about weakness in left hand, also started noticing twitching first in left arm (very occasional), than the next day all over body but mainly in legs (60% left calf) but occasional in left arm, and very occasional in right arm, left chest, right back, and maybe one or two small ones in face (rarest of all). That lasted for a day, now the twitching seems to have died down except the sporatic one or two, and when I'm laying in bed (before and after sleep).

D. Now I'm just trying to survive until I see my GP on Tuesday, than hopefully neuro not long after that. Have trouble eating, trouble focusing, and losing weight over worry. Have quit googling ALS, spending lots of time on this site and GA forum for my research. I've atleast convinced myself my trouble swallowing and slurred speech was all in my head, but now I"m on to limb worries.

Ok, that's my background, now to my SPECIFIC concerns:

1. Some of you will find this ironic. I'm actually concerned about my twitching with the ABSENCE of certain other symptoms. Many people on here complain of tingling, numbness, and pain along with their twitching. All of these things are suggestive that the cause is something OTHER than ALS since people with ALS generally don't experience these things. The fact that I have the twitching WITHOUT the "anti-suggestive" symptoms worries me more about ALS. I could almost go for some hand tingling right now just to put my mind at ease.

2. I seem to be able to usually activate the twitch on my left calf (one of the most persistent ones) by tapping on the muscle lightly. This scares me relentlessly since this is how I understand neuros find ALS twitches.

3. Some of my twitches (again, the damned left calf) are visible but I can't feel them. Again, makes me think ALS twitch (pretty much the summary of 1,2, and 3.)

4. I have objective weakness in my left hand. I recently took a physical capacity exam for an employer and though they were not very disclosing about results, I happened to see that my grip strength on my left hand was rated 80-80-75 versus the right hand 90-90-85 (3 repetitions). Also, when I pinch a mustard/shampoo bottle with my left thumb/forefinger and right thumb/forefinger, I seem to struggle harder, have more coordination issues, and make an objectively smaller dent than with my right thumb and forefinger pinching the same bottle in the same manner. This is currently my largest worry because it seems to be objective sign of weakness and not just perceived (although there is plenty of that too with feeling of left hand feeling tired, strained at times, and sometimes sore). Also, the left fingers feel slightly stiffer when I type and flex my fingers open and closed repeatedly as a test.

Whether left hand/grip/pinch weakness is pre-existent or evidence of early ALS onset is the question driving me absolutely crazy right now. Hopefully some of you can shed some light on some similar experiences to my above 4 points so I can atleast relax until I see my GP on Tuesday? Thank you so much.

BTW: I am right handed, thankfully. If it was my dominant hand with objective weakness, I would probably need a tranquilizer right now. That one seems to be doing well, in fact it is comparing the two that is freaking me out the most in regards to my left hand.

Re: A few concerning questions regarding BFS and ALS fear

PostPosted: May 9th, 2014, 1:07 pm
by mjd83
One other thing I didn't clarify.

There is one part of my calf in the same spot that is constantly twitching at a very low level (i can see movement of skin but cannot feel it, and seems to twitch every few seconds). All the other twitches I've detected so far are visible and I can feel, and are more sporadic.

I should also note this has me worried, as it is also the one that I can usually trigger with my finger (unless its just so frequent, that I think I'm triggering it... like I said, this is the one I can't feel.

Does anyone else have a variety of twitches, including the scary creepy crawly under the skin consistent twitch that you can see but not feel? Some of my twitches on other parts of the body are much less frequent and much more noticeable.

Re: A few concerning questions regarding BFS and ALS fear

PostPosted: May 9th, 2014, 3:14 pm
by RGB
The honest answer is that you need a medical professional to take a look at you and it is really limited as to what someone can usefully say here.

All I can add are just a few general points,

1. It makes no sense to worry about a few concussions, even if it doubled your risk of ALS (it doesn't) then you are doubling one-in-bugger-all and that still only makes a very, very, very low probability.

2. As I read about your left hand weakness I immediately thought, 'this guy is right-handed' so thanks for including that further down :)

3. If it was as simple as 'ALS twitches are visible but not felt' or 'twitches provoked by tapping equals ALS' then we wouldn't need to pay neuros so much! You are taking what are at best 'rules of thumb' and at worst 'anecdotal evidence from the crazy place called the internet' and extrapolating a self-diagnosis from them. It's your (understandable) anxiety doing that, it doesn't make it rational or medically-valid though!

Best of luck keeping the anxiety under control until you can see your GP, from personal experience I know how tough a time this can be. The fact is that what you fear is v.v.v.rare (especially at your age) and that alone is extremely good news (even if it doesn't feel like it right now).


Re: A few concerning questions regarding BFS and ALS fear

PostPosted: May 10th, 2014, 12:38 am
by Red Raider
I don't think your at risk any higher than anybody else on here because of concussions. Now being a vet and being in the military they say you double your chances like NFL players that is true but it's numbers nobody knows for sure. I'm a Iraq Vet myself and twitch just like you. You should get some clarification from your GP but stress will kill you my friend. I lost thirty lbs worrying of this stuff and it's been almost 6 months for me with a clean EMG and clinical and I still think bad thoughts sometimes which causes me to spiral into a black hole but this forum is great just read through some post of others and you will see your not alone. Stay away from the internet it's the devil. But when I read that military personal are twice as likly to get this disease I freaked out but my ALS specialist said they are not for certain just we showed higher numbers at that time maybe now they might be different I try not to think about it. Good luck at the GP lets us know how you turn out. AIRBORNE

Re: A few concerning questions regarding BFS and ALS fear

PostPosted: May 10th, 2014, 1:57 am
by TwitchyDoc
The concussion or head injuries have not been reliably proven to increase a risk for MND.

As for your other question, since you mention objective weakness, you need to be evaluated and preferably by a neuromuscular specialist. Those rules (like ALS twitches are not felt or can be induced) are by no means hard or 100% reliable, they are just hints.

As for the absence of other symptoms, members of this board call BFS whatever they have but medically BFS means only fasciculations by definition, without sensory symptoms. In broad sense we could think about nerve hyperexcitability causing both sensor and motor issues but that would not be BFS, strictly speaking.

Re: A few concerning questions regarding BFS and ALS fear

PostPosted: May 10th, 2014, 5:21 am
by Yuliasir
would like to note that objective weakness mentioned by our fellow is most probably normal physiological difference between left and right hand strength as he is right-handed.
Plus he complains for absence of sensory issues, so, if medical exam would not find clinical weakness in him, he would be probably one of the true BFSers on this site.

Re: A few concerning questions regarding BFS and ALS fear

PostPosted: May 10th, 2014, 10:30 am
by mjd83
Thanks guys for the replies, I sure appreciate it!

I have come to terms that most of my twitching is very characteristic of what is experienced on this board... i.e. most are all over the body, random, and I can feel them. I even have some variations from pops, buzzes in joints, classic see and feel twitches, etc. I feel them on the legs, ankles, behind the knee caps, arms, and lately be feeling some on the back and by shoulder muscles. This to me sounds very typical of the symptoms experienced by those on this board.

So it sounds like not every BFS twitcher has sensory symptoms... that is good.

What scares me is the specific calf twitches, always in the same spot. On my left calf, these are what I would call "micro-twitches" as they are often very small and usually can't be felt, unlike the other ones. What is more, in this same spot I can usually induce them by touch... on both the left calf AND on the right.. I actually induced one on my right calf today.

Also, the weakness in the left hand is indeed my non-dominant hand, and is not extreme as far as I can tell. I was wondering if it's normal for people to be able to, for example, squeeze a tennis ball or mustard bottle and make a deeper dent with their dominant hand than with their non-dominant hand.

I am scheduled to see a GP, will probably ask for referral to neuromuscular specialist, so I'm on the right track to get it checked out, and I'm in no way substituting advice given here for medical advice. I'm merely trying to manage my stress and right now, the primary cause of my stretch is not the majority of my twitches, but the specific ones in my calf that tend to be micro, and tend to be inducible with touch.

I just wondered if anyone else here experienced some of their twitches as being really small, seen but not felt, or can be sometimes induced by touch, and if this just happened sometime with stress/anxiety and/or BFS... or if it's extra cause for worry on it's own.

I value all input, thank you some much for taking the time and this is helping work through this until I see my doctor which is still 3 long, miserable days away!

Re: A few concerning questions regarding BFS and ALS fear

PostPosted: May 10th, 2014, 12:48 pm
by Red Raider
Brother I get twitches in my calfs all the time more on the right then left. I can see them sometimes but not feel them. I can feel them sometimes but not see them. Then of course I can see them and feel them more in the right leg than left. I get the fine twitching as well like a very fine twitch as well. I feel weak in my right foot and right hand. My muscles ache and feel weak but i haven't showed any clinical weakness so I pray to God everyday that this never turns into something bad. I've been like this for almost 6 months I would like to say by now I would be showing something bad but I don't know everybody is different. I do know anxiety will cause this and sleep deprived people get it bad as well. I have very bad health anxiety and I don't sleep worth a *beep* thank you military.

Re: A few concerning questions regarding BFS and ALS fear

PostPosted: May 10th, 2014, 2:20 pm
by mjd83

I hear you and thanks for the reassurance. I"ve actually been doing some searching and apparently quite a few people on here have reported "fine, dimple like, twitches" that continuously go off that they see but don't feel.... especially in the calves. We tend to get scared because we are told to be worried about the constant, small, fine twitches you can't feel.

Obviously, if we are all in fact experiencing something similar, statistically it atleast can't possibly ALL be ***. I also think the military has affected my anxiety as well, as this sort of thing is a common problem with veterans. That was something that surprised me in the General Anxiety forum, how many anxiety sufferers were veterans... even though it is something we would never talk about amongst ourselves in motor pool :).

Thanks a lot brother, I think it helps us to compare mutual experiences with this twitching thing. Odds say that we BOTH cannot have *** given our age and general incidence of the disease, so if we are experiencing similar things, chances are it's benign.