Arron... (and others) I have another question

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Arron... (and others) I have another question

Postby Twitchelly on October 28th, 2002, 6:27 pm

Arron, I address this question to you, because I have read that you have done quite a bit of research on this topic. I would really appreciate your expertise.
First; How long after you start twitching would you definently be able to notice any present weakness? I mean if you had been twitching for 6 weeks would you start to notice weakness in the area of the twitching?
Second; How would the weakness present? If you are twitching in your hand how will you begin to see the weakness. Would you be able to lift things, or move your finger, or type? I am curious if you have any thoughts, because I don't even know what to look for. If it was in the toes that you began to twitch, what would the weakness start like?
Third; Once you have the twitching even at its beginning stages what are the chances that the weakness is there and just not noticed, and are there any tests you can do at home to see if there is any weakness? I can walk on my toes and my heals, move all of my toes, etc., and as far as my hand all of my fingers move, they are tired, but I can hold things with all of my fingers and move them independently of each other, though they feel clumsy. I keep lifting our dogs cage (8 pounds) with each individual finger to see if they still work. (So far they do)
Finally, Do you have any idea how common ALS is in women in there early to mid twenties?? I am so scared that I think I am loosing my mind sometimes. Any answers you may have would be greatly appreciated. I know you probably get tired of answering the questions over and over again, I just had a couple of questions that have been killing me to find out. Thank you.
Rebecca
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Postby tlotoxl on October 28th, 2002, 9:46 pm

I've done all sorts of the same things to test my strength. At that point I had been twitching for almost two years, but I'd only recently done an online search for fasciculations and was stressed out about ALS or MS. I thought that my fingers felt weak and was freaked out about a feeling of tightness in one of my fingers and...

When I went to see the neuro he tested my grip strength, expressed surprise, 'Oh, no problems there,' and told me I didn't have to worry about ALS. He said that to worry about ALS I would have to be experiencing a profound loss of strength - like not being able to hold a pen or write my name.

Feeling a bit tired is something I think we all experience, especially once we start to twitch and obsess about our health. It may also have a physiological basis in fibromyalgia or whatever.

If I were you I'd see a neuro and get it out of the way unless you really think you can ignore all these problems. I felt better once I came here, but it also felt good to have a neuro say, 'there's no reason for you to worry about ALS.'

Oh yeah - I'm 27 and I got BFS when I was 24, though I've perhaps had rare isolated symptoms since a teen.
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Postby Arron on October 28th, 2002, 11:48 pm

Twitchelly, here's a post from a person with ALS from another board. The progression is relentless and continuous. Once a nerve ending dies, it's dead. You won't have weak days and better days, weak "feelings" yet be able to pick-up your dog's cage as you said.

The post which was a reply to someone's question, edited to fit here;
"My ALS progression has absolutely been progressive. No relapses, no remittance, just constant progression to the point where I am almost totally disabled. You know I have good days and bad days like anyone else but the disease is relentless. My state of mind has absolutely no bearing. If i am happy sad, stressed or relaxed, angry or feeling charitable, whatever makes no difference. This is also true with the atrophy. Pretty constant progression
my muscles don't twitch much. I don't usually notice them."

So here's the answers to your questions;
How long after you start twitching would you definently be able to notice any present weakness?
There is no "one" single answer. I mean, how long does it take to go from the flu to pnumonia? Everyone is different. The disease is relentless and progressive. What that lady meant by having good days abnd bad days was spiritually, not strength wise. Once a muscle is disconnected from your brain and has started dying, it's over. It can not and will not re-connect and this is when it starts to twitch. Most ALS twitches aren't even felt, let alone seen. Usually a doctor has to use a special light to see the twitches. I mean, the muscle is dying so its not like it has the strength or power to jerk fingers or muscle groups around like BFS twitches so often do.


How would the weakness present?
It will present itself by you dropping things, noticing that you can't close your hand or hold your toothbrush or coffee cup anymore. It is REAL weakness, profound and progressive, not wishy washy, weak "feelings" like fatigue gives you.

Once you have the twitching even at its beginning stages what are the chances that the weakness is there and just not noticed,
Very slim chance that the weakness is there but not noticed. You WILL notice weakness once it starts, period. Twitching is a SECONDARY action caused by the dying muscle, not the other way around.

and are there any tests you can do at home to see if there is any weakness?
Please don't fall into that never ending delima! All you will do is make your symptoms worse. Here's what happens. You twitch and freak out because you heard somewhere that ALS has twitching too, even though you have been pretty much mis informed. You start testing yourself and checking your body for atrophy. You test yourself several times a day to try and catch any new symptoms of weakness. About 2 or 3 days into this, your symptoms will worsen. Why? Because you are essentially exercising your body like it hasn't been exercised in years by testing your strength. You are so pre-occupied over your symptoms that you forget how much you have strained your body and strain and stress make the symptoms worse. Then you start feeling pains and cramps, which is also a direct result of "testing" your strength but your mind tells you this is ALS. Then you notice that your left calf is smaller than your right and that your right forearm is smaller than your left. Oh no! This is atrophy! At least that's what you'll think it is anyway, when in reality, you have ALWAYS had different sized limbs and body parts. That is normal but you never noticed it because it is NOT normal for people to examine themselves with a fine tooth comb and a micrometer! No one is perfectly symetrical, NO ONE!

The bottom line is this, if you are scared, go see a doctor to set your mind at ease. If you need help, be it meds to help calm your anxiety, then get some! If it is counceling to help clear your head, get some!
The best thing you can do is post nothing on this board for now. Don't wwaste your time asking questions when you should be READING every response and post in this site. Spend your time reading EVERY post on this entiire web site and you will learn what this stuff is all about and you can see how your symptoms compare to other's on here. ALL of your questions have been answered many times before in many different threads on this web site and in many different ways and in great detail. I'm not saying you can't post on here, of course you can. What I am saying is right now, you need to inform yourself on what BFS is and how it works and how if affects the rest of us so you can compare your symptoms to everyone else's, which in turn WILL make you feel MUCH better :-) in knowing you are NOT alone and the probability of you having ALS is a VERY slim one, especially if you have no REAL weakness involved. Time and knowledge is on your side!
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Postby Brian_B on October 29th, 2002, 12:24 am

I know when I started twitching and reading about ALS all of the sudden I started to "feel" weak and I just knew it was ALS. Also I started to drop things because once again I thought that was something that should happen since I "knew" I had ALS. Since going to neuro and knowing its not ALS though I no longer feel weak and no longer seem to drop things.
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Postby Guest on October 29th, 2002, 11:31 am

Tlotoxl- Thank you for your reply. I totally relate with the anxiety level involved with thinking you are weakening. It is down right scarey. I swear my mind can play some seriously cruel tricks on me. Are you really in Japan? Most cool! 8)
Arron-
"Please don't fall into that never ending delima! All you will do is make your symptoms worse. Here's what happens. You twitch and freak out because you heard somewhere that ALS has twitching too, even though you have been pretty much mis informed. You start testing yourself and checking your body for atrophy. You test yourself several times a day to try and catch any new symptoms of weakness. About 2 or 3 days into this, your symptoms will worsen. Why? Because you are essentially exercising your body like it hasn't been exercised in years by testing your strength. You are so pre-occupied over your symptoms that you forget how much you have strained your body and strain and stress make the symptoms worse. Then you start feeling pains and cramps, which is also a direct result of "testing" your strength but your mind tells you this is ALS. Then you notice that your left calf is smaller than your right and that your right forearm is smaller than your left. Oh no! This is atrophy! At least that's what you'll think it is anyway, when in reality, you have ALWAYS had different sized limbs and body parts. That is normal but you never noticed it because it is NOT normal for people to examine themselves with a fine tooth comb and a micrometer! No one is perfectly symetrical, NO ONE!"
That does in deed sound exactly like me. I think you may have hit that one right on the head. Thanks for your response.
I realize that this is not going to make me look overwhelmingly great, but I have read every post on here. From the gulf war syndrome causing double the ALS rates to the lady with twitching toes. I have read them all. I guess I just hadn't seen the exact answer for my questions. I didn't mean to reiterate things already posted. But I do thank you for your response.
Bryan B- I think I may be doing exactly what you said. Or at least my husband is convinced. He says that my arm is in cramping because my mind is making it do so. He says I drop things because I think I am going to. Perhaps he is right, but it does make one think doesn't it?? Thanks for your time.
Rebecca
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Postby Arron on October 29th, 2002, 12:04 pm

Twitchelly, sorry if my answers didn't come across right or sounded harsh. I certainly didn't mean it to be that way. I'm glad you read everything on here. It should have made you feel better knowing that what you described has been described over and over again by many people just like you who are fine. I mean, have you seen anybody on here come back and say, "yep, I saw my neuro today and he said I have ALS". No one has done that, so I just figured you hadn't read any of the other posts on this forum.

The first fears and the first onset of this stuff is the scariest. Yes, you will drop things and you will feel weak. That is all part of the stiffness and fatigue that comes along with this stuff. It isn't 100% in your head, although stressing over it will make symptoms worse.

Remember when you were a kid and you knew people were watching you walk down the street and all of the sudded you start this dork walk or you start to trip over your own two feet simply because you don't want to trip or walk like a dork? That is EXACTLY what is happening when you start dropping things or feel weak or start to get tensed-up and feel like your fingers don't want to work. It is stress related but the symptoms brought the stress on. So with that, it iosn't 100% in your head but a good portion of it is.

Fatigue and weak feelings is not clinical weakness. Clinical weakness is REAL weakness that doesn't come and go. Once you lose control of your thumb or finger in ALS, it NEVER gets better and it only continues onto the next finger, then the next, then the next, then the wrist and so on until your hand is completely immobilized and "stuck" in a certain position, usually witha cramped-like appearance to it, like people with Cereberal Palsey have, kinf of all knotted-up. That is real weakness. I mean, if you can't move the muscles in your hand because they are dead, you WILL obviously be weak and can't hold anything any more.

Again, sorry If I came across sounding like you should be reading rather than writing. I know writing doesn't always come-out the same way as talking does. Hope you feel better soon :-)
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Postby Guest on October 29th, 2002, 1:07 pm

Arron,
I wasn't offended by what you said. No need to apologize. I guess my thoughts and understanding are a little inhibited by fear. I appreciate your repost though. I really appreciate your oppinions. You have read a lot more about all of this than I have. I spent a week on a ALS web site and nearly died of panic attacks ever day I was there. So I will not be returning over there. :D Anyway, Thanks.
Rebecca
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Postby Arron on October 29th, 2002, 3:13 pm

Oh Rebecca, NEVER go on an ALS web site! It will scare the pants off you. It sounds like you are starting to understand this BFS junk a little better and that is good. Knowledge and sharing other's experiences with it only helps you to become more relaxed about it and not fear it anymore. You aren't alone. I KNOW without a doubt that I don't have ALS but if I go on any of the ALS or MS web sites, I have most of their symptoms. A LOT of symptoms from nasty stuff carry over into NORMAL people's lives, stress, general aches and pains, cramping, stiffness and so on. We ALL have some kind of symptoms that we could relate to MANY different diseases but the one main factor remains, you have to have ALL of the symptoms PLUS actual hard proof of the underlying desease itself and that is what the doctors are there for and why they get paid the big bucks. Trust the doctors. Even though we hear about an occasional isolated case being misdiagnosed, especially with cancer and other diseases, there are tens of millions of other people EACH DAY that are NOT misdiagnosed, so please don't take any marginal statistics out of context and try to relax. :-) It will get better sooner or later, and bad again, and better and bad.. oh well, you get the idea. These BFS symptoms come and go with no warning and no rhythm or rhyme but it could be a LOT worse, that's for sure. Hang in there :-)
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