I am scared to death

This forum is for posting your personal experiences with BFS: symptoms, doctor visits, fears, etc.

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Re: I am scared to death

Postby jerry2 on October 16th, 2011, 3:36 pm

Well, that's not it then. I hoped because of what I see as thenar atrophy in the middle and much weaker muscles in left hand, I have some kind of Carpal tunnel, first 3 fingers hurt me, but no, numb are last 2 fingers, doesn't make any sense :-( And last few days middle of my palm hurts like on fire, I have to put cold water on it.

Off topic or really on topic: Do "normal" people also have twitches? The small ones? I mean, last night I was telling my wife about the twitches and she told me I have one in my leg now and a little later she told me she had 3 in the neck one after another. Today I asked her if any today and she told me that she doesn't know, didn't listen. I wonder how many twitches a day happen to everybody. But nobody can know as ones that are not "counting it" do not notice it if it is really not something "bad" like my index twitching whole day. I mean I wonder, was I really 0 twitches one day and next day like 100, or it there something also like "listening" that I am distracted by every twitch and before day x I were not.

I have some experience here with bowel movements. When I was fixated I had cancer I could tell for one week before how many, what kind, what color, you get the picture. I asked my wife and she told me: dunno, wasn't focused. And now I am not focused and I dunno. I know when I have a "bad week" then I notice but I don't worry after coloscopy and it goes away.

This twitching, ALS, diagnosis, dents, atrophy, pain... it seems worse. Because there is no real 100% diagnosis and if symptoms persist one can be in agony. Even if doctor say OK, in 3 month it can happen again: ALS can happen at any time. In colonoscopy I looked at the screen, there was no cancer and that is 100% and the doctor told me it can not be any for 10 year now, they do not grow so fast. So my anxiety really stopped that day. But now I know I was not cured, it was waiting for another moment in life I guess... And this one seems to be on the hard side to get rid of.
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Re: I am scared to death

Postby jerry2 on November 8th, 2011, 2:08 pm

Ok, I owe a report how I am doing. I am doing bad. I am still into the ALS scare big time :-(

Most of my problems is feet now. Both feet. Apart from the fasciculations all day long I get cramps in the inner arch (median arch) and I see a lot of fasciculations (popping here and there). In my mind this fasciculations are destroying my muscles that are sore now :-( I still have problems in the soles of the foot, below the toes where the soft tissue is. I can hardly walk because of pain everywhere.

And I read that when the foot is weak and atrophied, you feel like walking on bones :-( I feel this way. I don't see atrophy in the feet but I don't examine it either. I can walk, but with pain everywhere, nothing helps. Either it is nothing (why I am in pain then) or ASL, I see no other explanation. And the cramps scare me also, I can hardly move big toe down without cramps.

Unfortunately my sensory symptoms are gone, like tingling and buzzing near big toe (inner side of sole). This sensation was conforting me ALS is not sensory.

I am so sick of this fasciculations and pain in my feet and everywhere I cry every time I feel it, I can stand it no more but I can not run from myself, I have nowhere to go this way...

I think about 2 days in the last month seemed there was a little less twitches, at least I didn't feel it all the time everywhere and in my feet, they could have been, I don't dare looking for them (I can not feel every one in the feet arch as I've seen some but not felt it). But it was better a day or two. It waries on day, some days are very bad if it is very bad the fascs in my feet are constant and else on my body a few a minute, if it is a good day it is lees in my body and some in my feet. I have them in my feet the most (but not constant pusling one), but yesterday I got one in the leg again that was there for 5 hours constant, big one :-(

Bit is it common for ALS to go to both foot almost same time (2 weeks apart)? The symptoms I have is like the arch is dropping down. And guess what, this is another ALS symptom, because muscles can not hold it no more and shoes are too tight (my right one feels tight now I have pain).

I started phisical therapy, was on the first session... The doctor thinks I am making them with my mind. I of course have a hard time believeing it :-(

Take care, just wanted to know how I am doing. Not one of those, no more twithcing gone from the forum anyway. It has been so bad that I didn't even write here no more.
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Re: I am scared to death

Postby bobajojo on November 8th, 2011, 2:26 pm

Jerry, there are a lot of reassuring things in what you are saying. First off, you are worried about pain and fasciculations. LOTS of people on here have exactly that, including myself. In fact, check out the "BFS Survey" thread. There are almost 400 people who replied to it describing their symptoms and see how many people talk about their feet. Also, you are getting them all over. I just got back from my neuro from the ALS clinic at Mass General Hospital and he said that he's never seen an ALS patient come in with widespread symptoms. It's always localized to one area. You also have had sensory symptoms, my neuro said "ALS never presents with sensory symptoms". I hope this helps. -Matt
Over 10 billion twitches since May 2011.
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Re: I am scared to death

Postby jerry2 on November 8th, 2011, 4:41 pm

Thanx, it does. But I have to mention... 80% of my fasciculations are spread over LEFT SIDE of my body / hands , legs, feet, trunk. They are so much less on the right side. Should this be worrysome?

I have also lost sensory problems, but I have again the 2 foot fingers "half numb" or at least they have wierd sensations, like I don't feel them 100%.

On my ring finger in hand on the palm side I got a pea sized lumb for a week that hurts a lot when pressed. I have no idea what it is and I have no idea where all this will end.
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Re: I am scared to death

Postby chrissi on November 9th, 2011, 5:23 am

No, this whole BFS thing started 80% on my left side, all the twitching and stuff. By now, it has completely left my left leg excepting some calf twitches , and my right side isscrewed up :roll:
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Re: I am scared to death

Postby jerry2 on November 9th, 2011, 5:28 am

Funny, most of you mention calf twitches, I don't have any around calf. I have them on my foot, leg, but not calf.

I have severe foot pain now, the soft tissues of the soles hurt and my inner arch muscle is so crampy. And I see many fascs there that of course scare me.
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Re: I am scared to death

Postby chrissi on November 9th, 2011, 6:43 am

Jerry, foor arch fasciculations are sooooooooooo damned normal that no neuro does an EMG there, because then they would pick up all kind of strange signals in healthy people...
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Re: I am scared to death

Postby jerry2 on November 9th, 2011, 6:52 am

... and I thought I would ask neuro to do EMG on arch because there I have most of them (I have others like 5 hour strong one in the leg and lot of small pops over the body...).

He wanted me to do EMG on left hand where he saw "atrophy" but in hand I don't have any fascs at the moment (sometimes thenar eminence under thumb for a split second)...

But I have thought arch now... And I know I can induce faultys ones so easily as the skin and muscles there are really soft and if I do not hold my fingers I can involuntarily move finger a little and that resembles fasciculation. But even when I hold fingers and don't move at all, I get them and I can also feel them when I am at rest, sometimes very strong popping.

As I have to get EMG in the future I thought arch would be the ideal place to calm my fear that the cramps and pain in arch muscles are because my muscles are in fact dying :-(

I admit... maybe everybody have fascs there, I don't know, maybe I had them before, but I wasn't paying attention and it is hard there sometimes to diferentiate the "tingling" feeling in the arch, some vein pulsating and fascs. I know I didn't have popping all over, but about archs... Maybe the pain in the archs got my attention and I saw so many small ones like worms crawling under my skin (didn't feel all of them at all)...

You sure I can not do arch EMG and that arch fascs are on healthy people also? I have not read about this nowhere...
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Re: I am scared to death

Postby chrissi on November 9th, 2011, 7:28 am

Yes, I have been told by a neuro and also read it. I fact there are some neuros that even do not like doing calf EMGs for the same reason....
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Re: I am scared to death

Postby Simonaa on November 9th, 2011, 9:01 am

:(
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Re: I am scared to death

Postby mwagner on November 9th, 2011, 11:13 am

The neuro doing my EMG did not do my feet even after I practically insisted. He said, it's the same nerve group as your legs, and the vast majority of people would have "traffic" on an EMG because we use our feet so much. I still have a hard time accepting it, but he does know better than me. I figured if he was worried about my twitching foot he would have done something more about it.

I too get pains in my right arch right where it twitches. Not a cramp, per se - but a feeling like it could cramp.

If you want a different perspective - my chiropractor says that one part of my foot is directly related to my lower back. He told me to roll my foot on a tennis ball for 5 minutes a day to work out the pain. It's not bad pain but just an ache for me.

It could be that the muscle is twitching so much that it gets tired. That's my best guess. That doesn't mean it's "dying". It's just a very small muscle and could get achy, right?

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Re: I am scared to death

Postby jerry2 on November 9th, 2011, 11:39 am

Thanx, did you step on a ball for 5 minutes a day? ;-)

So I guess I won't get foot EMG then... I can have shoes for 30 minutes but then it just feels as if my shoe is too small tto fit, I get aches everywhere and I get lot of pain in my inner arch and soles. Of course I read about ALS patients that need 2 sizes bigger shoe because of the arch collapsed :-( Didn't help to read that...

What I find wierd also is this: Sometimes I get "shots" of twitches all over. It looks like in 1-2 seconds I get 3-5 twitches one after another, it's like some electricity would be released. One is for example in my left biceps, one in the right foot (make that two!), one in the left leg, one in the abdomen... It lasts for 1-2 seconds... How wierd is that :-(

PS - Reading about doug0 and his numbness also didn't releave my mind. Didn't you all say that sensory is not included in ALS? ;-( Yes I know, it could happen and we are all different...
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Re: I am scared to death

Postby Simonaa on November 9th, 2011, 12:36 pm

It's just like me!!!!!
i twitch every SECOND on an new muscle!!!
Every second - since April 2011
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Re: I am scared to death

Postby jerry2 on November 9th, 2011, 12:43 pm

Well, I don't twitch every second on a new muscle :-) I don't twitch every second, only few times a minute ;-)
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Re: I am scared to death

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