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terrif1ed

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Hey everyone,

I have been experiencing muscle twitching mostly confined to my calves & thighs but occasionally jumps to arms, butt chest, fingers. This has been going on for the past 2 weeks but seems to be worsening. The visible & felt twitches dissipate with movement and that in of it self eased my fears to a degree (just figured it was BFS triggered by stress)... However being the masochist that I must be, I decided to take a flashlight to my calves in the dark and angle it so that the faintest of movement could be detected. I almost immediately found a faint pulsing twitch on my right calve (It looks like a pulsing snake bite; 2 pulsing twitches only about half a cm, separated by an inch or 2 of non pulsing skin). Then I found pulses in both palms of my hands and right thumb there is the subtle twitching. I'm sure I'd find many more in different places if I kept looking. These twitches would have never been felt or seen unless under these circumstances so who knows how long they've been going on... But the lighting I created definitely brings them out. The fact the ones I have found appear in random places and not bilateral or symmetric makes me feel this couldn't simply be a circulatory or arterial pulse? Well, Lets just say I wish I never whipped out that flashlight because I have been mentally downhill and miserable since.

That is because I have read that the invisible "local" type twitching is more specific to ALS - Especially when it is constant. I tried to flex my calve or shake it off and the twitches still remain and have for the past week .. Since discovering ALS I have done the typical at home strength tests (which nobody should do as it only worsens anxiety!) This involved working the calve muscles.. I know working out in of itself can cause twitching but I don't think constant invisible twitching? My palms (especially my right) has had a burning sensation for the past week... Don't know what that's about... My hands do appear atrophied and I can see the slight differences when looking at older pics, especially in my palms..It looks like holes. My calves and legs overall have always been "weak" as I never work out or do much walking so it's really hard for me to differentiate *lack of exercise atrophy* vs ALS atrophy...Under the harsh flashlight I see many little crevices and dents throughout my legs but I want to think that's just hidden cellulite brought out by the lighting (ew! haha). I don't know how my leg strength exercises would have compared to the same exercises done 4 years ago so I really have no baseline.

Basically like my name states, I'm terrified, and kind of in state of denial (searching for other explanations, any other disease where this could fit). BFS is supposed to have very noticeably felt wide spread twitches, but I have not heard of it producing the ones I have found.. Which seem consistent with ALS (localized, 'silent' twitches). I was also recently tested and found to have Lyme's antibodies (although not officially diagnosed Lymes) Want to believe Lyme's can cause the very fine twitching, but it seems the people with Lyme's who have twitching have the widespread very "obvious" kind like with BFS. I'm just really scared especially because I feel like I'm too young to be dealing with something so sinister (I'm 23).. I see the neurologist in 2 weeks.
 
The good news is that you have widespread rather than focal twitches. Nothing that you say about twitches, ALS etc makes a lot of sense. I think you have been misinterpreting what you read. You would know if you had signs of ALS, you would be aware of the weakness and not need to go searching for it. Weakness, is what generally makes a person head for the neurologist. It doesn't matter how your fitness was a couple of years ago, so you have a baseline. There would be something that suddenly alters in your life, For me it was being unable to go up stairs and up slopes, as I used to ( I do not have ALS).
You are a victim of too much anxiety and over reading misinformation. When you see the neurologist, make sure you listen carefully to what he/she says, believe what is said.

Aly
 
Time to take a step back, take a deep breath, and relax. If you are truly concerned, you should see your GP and then get a referral for a neurologist. The only one's who can put you at ease will be the medical experts. It does not sound like ALS to me - I am not a doctor, nor do I play one on TV. I am however a caregiver of a spouse with ALS and have researched this thing until I was blue in the face. Remember, stress and anxiety will make your symptoms seem worse than they are.

Our best advice is to see your doctor. Go out and live your life, smell the roses, and enjoy your family.
Good luck!
Love and light
Meg
 
Those are called fasciculations. A million things could be causing them. If you don't have atrophy or weakness accompanied with them, or if they aren't confined to specific limbs, then don't sweat it.
 
Furthermore, there is a one in 6 million chance that you have juvenile onset ALS.
 
I do have atrophy and weakness. Is it painfully obvious on quick glance? No. But my right thumb muscle is clearly thinner with less bulk than my left (also incidentally the same thumb that's been twitching non stop)...I'm a righty btw. My left calve feels much flabbier than my right but it's my right that's been twitching non stop. So who knows - Saw my Lymes doctor today and he thinks there's multiple co-infections going on and they drew tons of blood. He also immediately referred me for an appointment with a neurologist he works with (in 2 days!).. This is all happening so fast. I know this might sound crazy but I suspect the Neuro will want to do an EMG and I'm going to refuse. If that test comes back abnormal I will completely go off the deep end and drive myself even further into depression over this. I can't handle that definitive diagnosis... I'd rather not know for sure than definitely KNOW this is reality. I guess only time will tell..
 
If your doctor wants to do an EMG and you refuse dont bother us again, it's a waste of time talking to you!
 
I'm sorry but I'm just not strong enough to handle the implications of the test coming back abnormal. I'm just not plain & simple. My doc wants to start me on IV ceftriaxone and I'm all for it.... If I improve instead of continuing to decline I will then know that this was all caused by Lymes and not ALS.. At this point, mentally, that will be a better indicator for me then the EMG. Ofcourse I will come back to conclude what ends up happening for the many others in my position.
 
terrified,

Here is something to think about. You are on a forum specifically for people dealing with a disease that is going to eventually kill them. They all know it. Yet, these people take time out of their lives to answer questions for people like us in the diagnostic process.

To come in here and say "I'm sure they will want an EMG but I'll refuse" is just like slapping them in the face. Don't you realize that? Is it really better to drive yourself crazy--as you're so obviously doing by reading your posts--then NOT get a diagnosis?

My God! I've got atrophy in two hands, I'm falling down, I am choking on a darn drink of diet coke, I am getting weaker by the week. Do you want to know what weak is? It's not being able to open a toothpaste lid. It's not being able to push the spray can on your hairspray. Atrophy? Try concave space where a normal muscle should be. EVERYONE twitches. And, honey, if you have to use a flashlight to see yours--you don't have ALS

You have the chance to see the neuro--without fighting hell and high water to do so--WHY even GO if you're going to refuse testing?

And, be very careful with the so-called Lyme specialist. From what I've read--the lab they use says EVERYONE has lymes. So, think about that and get a second opinion.

This kind of thing is why some of the members here that could be a great help to those of us with concerns are hesitant to even read this portion of the forum.

WHY DID YOU Come here at all? Why aren't you posting on some Lyme Disease forum?

No one here can tell you if you have ALS. At your age, it's incredibly unlikely. But people have tired to give you advice.

I can't believe you've managed to get a neuro appt with two weeks of twitching. Sigh. Something is definitely wrong with the healthcare system.
 
terrif1ed:

I almost cried reading this, I so want you to feel better! So I'm going to help you: The others are hiding the truth from you, it's a vast ALS conspiracy, you have it! Normally you'd have 2-5 years to live, but now that you've used the flashlight, well, you shouldn't have done that. You see flashlight beams speed up progression exponentially, you may not even last the two weeks until the neuro appointment. Get your affairs in order, leave all your assetts to ALS research.

Oops, sorry that was the ALS speaking!
 
I definitely have Lyme - My grandfather has it as well, we live in a very high risk area and ticks are a very common occurrence here... Don't know where you learned false positives are common? They are actually very rare. The immune system won't produce antibodies to B.b unless it were actually exposed to it at some point. False NEGATIVES are very common especially in late lymes because after awhile the immune system cannot continue to create the high amount of antibodies it once did like when the Lymes first hit. This is why Lymes patients with the LOWEST titres and borderline positive's are usually the sickest. When the test come's back HIGHLY positive with antibodies through the roof and many bands detected, this usually indicates an acute infection, something recent. You can look this all up if you wish.

As for refusing an EMG, look - I'm not refusing treatment and very much wanting to see this Neuro.. My personal reasons for not wanting this test should not be judged and I should not be getting attacked... As I have read you have not yet had a followup EMG, but based on your symptoms do you really need one to tell you something is very wrong? No as you indicated you are obviously struggling and for me personally, that would be as good an indicator as anything else. I don't think me not wanting that test is disrespectful or anything how you're perceiving it. As for the atrophy, I have HOLES in my palms, and as stated before my right thumb is definitely smaller than my left.

By the way, below is an excerpt describing the differences between benign twitching and ALS twitching. These are the type of twitches I have....which is why then can only be viewed with a flashlight - the very fine almost invisible ones are the type of twitches that precede the more obvious ones (which I also get).

"In ALS, the nerves located in small fiber of a muscle begin to lose their connection. As such, they begin a process of slight fasciculation, which is like a distress signal for another nerve to come to it's rescue and reinervate. ALS twitching starts out very fine, and pretty much invisible to the naked eye. However, since these affected muscle fibers are no longer working well, you tend to notice weakness and possibly slight atrophy before you ever notice twitching. The comment about ALS twitching not coming and going is very true, according to him. Once this muscle gets cut off, unless it reinervates, it continues to rhythmically (important, meaning steady and constant) send out these distress signals harder and harder and more frequently. It doesn't stop until complete muscle death, which, by then, you won't need twitches to tell you something is horribly wrong. This is important, because the nerves around it have also begun to lose their connection and are beginning to fasciculate (thus, no new nerve supply can come to the rescue). That means progression of twitching--from a very small localized area with very fine,steady fascics that you cannot even feel or see to a larger group with more intense twitching.
My neuro sees ALS patients come into his office complaining of, say, visible atrophy in their hand. They don't notice the twitching. He then begins to ask them questions about noticeable weakness, and they often say things like "well, now that you mention it, I've been having trouble opening jars." He then puts their hand under a black light (or whatever it was--can't remember) and shows them the fascics.
I think a conclusion can be drawn from what he has told me. ALS twitches are likely incapable of being noticed early on as the muscle is dying, but the resultant weakness and atrophy are not. Sure, when the weakness progresses to affect large areas of surrounding muscle, the twitching becomes intense and noticeable, but by that time, you are having all kinds of physical problems.
If anything, visible twitches are the least likely for concern, because by the time they are visible and thumping, if you have no real weakness, it's benign. But this is also not to say the invisible ones are ALS, either, because I've had very fine twitches in places like my neck and elbow and foot for 2 years now. You don't denerve for two full years and not notice things like not being able to lift your arm or not being able to keep yourself up on both feet. My calves have been visibly ballistic for 2 years straight, and no weakness and no atrophy. In fact, at this point, this intense twitching in my calves actually REASSURES me of a benign condition!"
 
Also I don't expect to diagnosed online, That is not why I came here. I was seeking advice and support for what I've been dealing with (isn't that what this portion of the forum is for?) and most of it was helpful and I do very much appreciate those who took the time to genuinely respond.
 
As for refusing an EMG, look - I'm not refusing treatment and very much wanting to see this Neuro.. My personal reasons for not wanting this test should not be judged and I should not be getting attacked... As I have read you have not yet had a followup EMG, but based on your symptoms do you really need one to tell you something is very wrong? No as you indicated you are obviously struggling and for me personally, that would be as good an indicator as anything else. I don't think me not wanting that test is disrespectful or anything how you're perceiving it. As for the atrophy, I have HOLES in my palms, and as stated before my right thumb is definitely smaller than my left.

You asked for opinions -- you got an opinion. If you don't like your "personal reasons for not wanting" a standard medical test used in diagnosing neurological disorders to be judged, then keep your foolish notions to yourself.

If you want to tie your neurologist's hands in advance and make a routine diagnostic process into a drawn-out nightmare, by all means do so. But don't come here expecting either validation of your silly ideas and theories or sympathy for how long it's taking you to get a definitive diagnosis.

By the way, below is an excerpt describing the differences between benign twitching and ALS twitching. These are the type of twitches I have....which is why then can only be viewed with a flashlight - the very fine almost invisible ones are the type of twitches that precede the more obvious ones (which I also get).

By the way, it is a violation of US copyright law to reproduce that much material from someone else's printed or online work without properly crediting the author, so we'd appreciate the source of the material you quoted.
 
here we go again with another one convinced they have als and know what there talking about:roll:
yes notme,thats why i dont come on here or answer anymore...........got better things to do with my time left on this earth.

terrif1ed,before you notice any twitching or atrophy you would have clinical weakness.
everyday tasks which a normal person can do would begin to be difficult to perform.
those with mnd dont fixate on twitching,its the least of there problems.
you have just said you have lymes,then go to a lymes forum instead as someone said you have one in six million chance of having als..........go play the lottery you will get better odds.:roll:
 
You don't have ALS. The doctor, with two weeks of 'twitches' will be very unlikely to even order an EMG/NCV--so you probably have nothing to worry about.

You're 23. Can you button your shirt? Push your hairspray can? Open a bottle of soda? If the answer is "yes" to those questions, and your problems are in your hands--it's doubtful it's ALS.

Can you walk up stairs? Are you falling? Do your legs look like ANY pictures you've seen of atrophy? If no--you likely don't have ALS.

It takes two hands to hold a mug of soda. I can't turn a key with my left hand, or push the buttons on my door locks. I can't push a spray can. I can move the fingers well enough at this point to still type. I haven't been able to button a button in over a year. It's not hard to do the above things--I can NOT do them. My atrophy is in two muscle groups on each hand--visibly--none of that is enough for a diagnosed. Too many other things are possible. An EMG/NCV has to be done to diagnose ALS. Period.

ALS is not diagnosed until other causes are ruled out. That requires extensive blood work, MRI's of the spine and sometimes brain. Some even require muscle biopsy. There are a lOT of diseases possible with clinical weakness and atrophy. No test can rule ALS in or out other than an EMG/NCV. Period. There's no blood test for it. There's no x-ray that shows it. It won't show up on an MRI.

In essence, you've convinced yourself you have lyme disease. Hopefully, if so, it's early enough to be treatable. I say "convinced yourself" because yesterday morning it hadn't been confirmed and today you say "I have it". great. That's your DX. You don't even need to see the neuro. You don't have ALS. I'm very happy for you--honestly.
 
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