BFS in a nutshell

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BFS in a nutshell

Postby Arron on November 3rd, 2002, 11:20 pm

BFS Q's & A's by long time BFS'er and independent researcher, Arron Johnson:

How does BFS usually start?
It can happen at any age, with any gender and at any time. It usually starts with a small twitch in a finger or an eye lid or in the calf of the leg and just won't go away. This usually sparks-up some curiosity in the person to look-up what a "twitch" actually is, only to find outdated information that says something to the tune of “continual twitches are an indicator of a motor neuron disease such as ALS“, which is SO un-true and taken out of context.

How long does BFS last?
In most cases, it is quite a while. such as years. A few people seem to recover fully but most have varying symptoms that come and go for years depending on stress levels, illnesses, not enough sleep and so on.

Are there any treatments for BFS?
No, not really any good one's and so far. It doesn't look like much is in sight either. After all, it is a benign condition so researchers trying to develop treatments and cures for much worse things in life aren't putting much time, money and energy into a benign condition, and rightly so. The thing with BFS is that "usually" it starts-out slow, with one little twitch and then progresses into a frenzy of twitches all over your whole body and it will usually stay that way for a while, then all on it's own (especially if stress and anxiety is reduced) they will subside to only a few a day. This is the "norm" but not the absolute rule. With that, people have tried remedies such as copper, magnesium, multivitamins, more sleep, herbal supplements, stress and anxiety reducers (be them meditating or medications) exercise and a whole slew of other home treatments. There is a very big "placebo effect" with BFS being that it is directly collated with stress and anxiety, so when a person starts taking what they believe will be a "cure", their twitches will usually subside. This also happens if nothing is taken at all and BFS sort of runs it's course. Many people that have taken remedies, have later posted on web sites stating that indeed at first, the twitches had subsided, but came back again after all. This again is consistent with taking nothing, hence the placebo effect. With BFS though, it is a matter of what works for you and staying calm and keeping stress and anxiety at a minimum, because although BFS may not be "caused" by stress or anxiety, it most certainly does feed off of it, and symptoms will go up and down according to mood, stress, anxiety level, tiredness, illness and so on. The only thing that does seem to help are medications to alleviate stress and anxiety, which in turn help some of the symptoms subside. These can be temporary meds that are used "as needed" which are called "Benzo's". Valium, Ativan, Buspar, Xanax and Klonopin are a few brand names of benzo's and they work very well at reducing severe stress and anxiety and helping you to relax and sleep at night as well. There are also long term meds for this that are called SSRI's, such as Paxil, Prozac, Celexia and so on. These commonly take 2 to 4 weeks before they get into your system and start doing what they are supposed to do. The big problem with SSRI's, (even though they work quite well once they get into your system and start working), is that the first symptoms and side effects during the first couple of weeks can be really harsh. These side effects include severe anxiety, twitching, body jolts, sleeplessness, hot flashes, tingling from hell, slurred speech, clumsiness, being in a zombie-like state and many other really undesirable feelings. Getting rid of symptoms like that is the very reason you are taking the meds in the first place. Just remember, these meds do help many people out once they get past the first stages and remember, with SSRI's, the first couple of weeks of taking it, it all gets much worse before it gets better.

What causes BFS?
There have been some theories that BFS starts after an illness such as a bout of the flu or a bad sinus infection, which would make some think it has to do with some sort of autoimmune response or post viral response. Some neurologists have started that BFS is caused by irritated nerve endings or irritated muscle linings. There have been theories that it is a type of Herpes virus that has somehow gotten into the nerve conductors that control muscles, these too are wishy washy so far with no real hard evidence as of yet. There are also the theories that stress and anxiety cause BFS, but as with all theories that point in one direction, there are just as many other cases that point away from it, so as of right now, it all seems pretty inconclusive. Stress and anxiety do play a big role in BFS and will make symptoms worse when stress and anxiety levels are high, such as right after someone reads that twitches are an indicator of ALS. That usually put the person's anxiety and stress level off the scales which in turn, makes the symptoms explode to every part of the body, which is turn, makes the person even more sure they have ALS, which without weakness or loss of muscle control is highly unlikely. It can be a vicious cycle that is very hard to get out of once you get caught in it.

What are the symptoms of BFS?
BFS usually starts in the calves of the fingers / hand area, but in reality, it can start anywhere on your body. It usually starts with a little twitch like you normally get on occasion, but this twitch just won't go away. It keeps going, and going, and going. Usually, this will last a few days and the twitch will either stop and move somewhere else, or that twitch might stay and more will pop-up elsewhere. Along with the twitches comes aches, pains, stiffness, tingling, numbness , tremors, visible and non-visible shakes, pins and needles, body jolts, fatigue and an ever changing variety of twitches that go from little tiny one's that you can see but not feel, to great big thumpers that can move a whole limb. Other symptoms can be cramping and pain. BFS with cramping is known as BCFS, aka “Benign Cramp Fasciculation Syndrome", and it is just about as common as regular BFS. Exercise intolerance is another common symptom, where you do a little bit of exercise but afterwards you feel like you just ran the Boston Marathon and the pain can last for several days afterwards. Twitching can increase dramatically after exertion or exercise as well. Fatigue is another very common symptom and can be mistaken for weakness associated with ALS, and most of the time, it IS mistaken for clinical weakness. Fatigue can be felt as a "drained" feeling, lack of energy, weak and/or rubbery legs or arms and so on.

What is the difference between "perceived" weakness and "clinical" weakness?
A tell tale sign of ALS is clinical weakness. This is REAL weakness that is permanent and continually progressive. It is caused by dying (or already dead) muscle tissue and/or dead or disconnected nerve endings between the brain and muscles. Once this happens, you lose control over that muscle PERMANENTLY, which leads to dropping things, the inability to unscrew lids off of jars, the inability to hold your coffee cup or even raise your fork to your face when eating. When it’s in the legs or feet, falling down or the inability to stand or get up from a chair is common, not being able to stand on your toes or walk on your heels because the muscles are dead. When this clinical weakness is associated with ALS, it migrates onward from that point with no looking back. There are no good days or bad days, meaning, you won't lose control of your hand one day and regain control of it the next. Once muscles and nerves have died, they are dead and can't be brought back to life.
Fatigue and "perceived" weakness is common with BFS and can cause weak or rubbery legs, difficulty raising an arm or leg into the air one day, but not the next day, a drained feeling with no energy and even actual "weak" feelings where your arm just feels like lead and you have to rest it constantly. The difference between these kinds of BFS weaknesses from ALS weakness is that BFS weakness (which again isn't really true weakness at all) will get better in a couple of days, where ALS weakness is continually progressive and NEVER looks back. A neuro can tell a case or clinical weakness associated with ALS the minute an ALS patient walks through the door. By the time you notice the weakness and/or twitches associated with ALS (enough to warrant making a doctor's appointment), you would already be a few months into the disease and a good clinical exam will find problems you weren't even aware of. BFS "weakness" on the other hand, is pretty much only fatigue and although you may "feel" weak or drained-out, if push comes to shove and you put aside the pain, fatigue, stress or whatever else you have, you still have your real strength. I mean if a car was coming at you and you had to jump out of the way, you still could, where an ALS patient couldn't move at all.

Where do the twitches occur?
They can occur in ANY "voluntary" muscle on (or in) your body. Voluntary muscles are all of the muscles you have to “think” to control, such as arms, legs, abdomen, tongue, cheeks, eye brows, throat, fingers, back muscles, scalp muscles, ear muscles and so on. Pretty much everywhere on your body can (and usually will at one point or another) twitch, EXCEPT your heart and internal organs that are controlled without having to "think" about them. There are even times where VERY personal areas of your body will twitch, places you never thought you had muscles will twitch as well, so don't be surprised when this happens.

How do twitches vary?
Twitches with BFS vary greatly. A lot of people experience "buzzing" which is actually a very fast, small twitch that feels like someone is holding a vibrator against your skin. Other twitches appear as little ripples just under your skin. These are usually felt but sometimes aren't. There are the twitches that hit one spot and disappear and there are others (such as finger twitches) that will move the finger to one side, hold it there for a quick second, then release it back to normal. There are the jolt twitches that move a whole body part, such as a hand, an arm or even a leg. There are also the creepy - crawly worm like movements often found in the arches of the feet and ankles and calves that you can see but are sometimes not felt, and a lot of people get the body jolts known as myoclonic jolts. These are also benign and are commonly associated with BFS symptoms and are nothing to be afraid of. There are the hit and run “thumpers” where you get one big twitch in one spot and then it’s gone. It may hit an entirely different spot later or even the same spot over and over again with lots of time in between with no twitching at all. There really is no “normal” or “abnormal” twitch with BFS because there is such a wide variety. ALS twitches on the other hand are a secondary reaction from dying tissue and how hard do you thing dying tissue can twitch? Not very hard at all. Most people diagnosed with ALS never even noticed the twitches and it is common for a doctor to use a type of strobe light to see them with the naked eye because they are so fine and weak. People with ALS “usually” go see a doctor because they are falling down or can’t grip and hold their coffee cup anymore or have difficulty getting out of bed or up from a chair. They usually don’t go in because they noticed twitches, and again, being that twitches are a secondary symptom of ALS, there WILL be other underlying symptoms the doctor will find that will point towards an ALS diagnosis, but that is only after many tests are done. BFS can be diagnosed by a neuro in just a few minutes and ANY twitch that is considered benign, is BFS in one way or another. Some doctors will order tests even though they don’t think anything is wrong. Do NOT be afraid if this happens, because it is VERY common. The doctor has to cover his butt and needs to rule-out, legally on paper that nothing else is going on for the insurance company or just for his (and your) peace of mind.



What is the difference between a BFS twitch and an ALS twitch?
There is a BIG difference between the two. ALS twitches are caused by dying muscle tissue as the nerve endings disconnect between the muscle and brain which in return cause the muscle to die and shrink. This is a SECONDARY action and it ONLY happens AFTER the muscle has started it's dying process, NOT before. So with that, ALS twitches (by the time you notice them or IF you even notice them at all) will most certainly have some kind of weakness or immobility of the muscle involved at the same time. Also, ALS twitches and symptoms usually start in a hand or a foot and will migrate from that point forward progressively and continually and relentlessly. They will NOT be random twitches like BFS has. You won't have a twitch in your finger one second, and a twitch on your back the next and a twitch in your calf the next and a twitch on your tongue the next with ALS. ALS starts in one spot and progresses continually through your body, not at random. ALS twitches are usually very fine and again, have WEAKNESS associated with them.

Is there a blood test to show whether you have BFS or ALS?
No, not really. It is common to have an elevated CPK level with BFS but not always. CPK is a liver enzyme function that can be elevated in the presence of BFS or a NMD. Other than that, everything else is usually normal.

What other tests should I do to check for the cause of my twitches?
Lyme Disease (a disease spread by Dear Ticks) is one of the main things to look for as well as Thyroid problems. Both of these can cause very similar twitching, aching and other problems just like BFS. A blood test or two is all you need to check for those.

What other tests should be done to diagnose BFS or ALS?
If you are having symptoms that are scaring you, you need to see a doctor and get a referral to a good neurologist so an EMG and a clinical exam can be performed. This will rule-out any nasty diseases. A neuro might also want to do am MRI of the brain and spine looking for damage caused by a previous accident or injury. This is all pretty standard procedure for any neuro, so don't be surprised if they order a few different tests. It's only to rule out other things and to cover their butt. keep in mind, ALS is VERY rare, MUCH more rare than BFS.


How long do twitches last?
Twitches can hit one spot one second and be gone the next. They can also hit one spot and stay there for days, weeks, months and even years in some cases. It is not a bad sign if a twitch stays in one particular spot for extended periods of time. BFS'ers call these "hot spots" and they are VERY common in the calves, arches of the feet, eye brows, eye lids and fingers, but they can also be anywhere else they decide to settle into. At the same time, you can have any number of other spots on your body twitching at any given time. These can be amplified at times of stress and/or anxiety. You might have some days where you hardly notice any twitches at all, and a few days later, have them from head to toe all day for several days. This is the "norm" for BFS.

Sometimes I can hardly move and am in a lot of pain, is this BFS?
Maybe and maybe not. There is another condition that has many symptoms that cross over with BFS plus pain called Fybromyalgia. This is also a benign condition and has everything from twitches to pain to cramps to fatigue to you name it. There has been speculation by many neuro's and doctors that BFS and "Fibro" and actually one in the same or at least related somehow. They are both diagnosed simply by eliminating the possibility of the nastier diseases and conditions. BCFS is another condition that is basically BFS with cramping and more pain. It too is benign but a little more severe in the symptoms simply because there is pain most of the time along with the other symptoms.

Sometimes I have trouble swallowing, is this BFS?
Actually no. It is more associated with stress and anxiety. What scares some people is that they believe they might have "bulbar onset" ALS and even though ALS in itself is already rare, bulbar onset is even more rare. Bulbar onset is also usually fast spreading and one would lose the ability to talk, chew, move food around in the mouth, swallow and so on pretty rapidly. Stress also has symptoms of swallowing difficulty at times that can last for weeks and months which scares the daylights out of people that haven't seen a neurologist to rule ALS out. It's amazing what stress can cause and what a vicious cycle it brings to people suffering from BFS. The big difference between stress related swallowing / mouth / throat problems over ALS related problems is that ALS is continually progressive and relentless, whereas stress related symptoms will come and go, with days of being just fine or times where you were active and didn't even notice your symptoms because your mind was off of them. You can't just make ALS symptoms go away by taking your mind off of them. It doesn't work that way when you are dealing with dead nerves and muscle tissue. There is another strange symptom that is common with stress related throat problems, noted as the “lump in the throat” feeling. This too will pass as time goes on and stress levels calm down.

What should I do now that I have BFS?
Well, it is a benign condition, so there's not a whole lot to worry about. It usually gets better after a couple of months and after that, it may either subside even more, go away totally or stay the way it is, or it may have good days where you hardly notice anything at all and other days where you could just scream because every inch of your body is twitching or having some kind of BFS symptoms. Hey, it could be a LOT worse, so try to relax. Start taking it a bit easier in life. Try to get rid of the things that stress you out or cause you anxiety because these two demons will only amplify any symptoms you have or bring back one‘s you thought you got rid of. Try to relax more and sleep better. If you need "help", then get a prescription for a good medication to help you reduce stress and anxiety and sleep better. If you are one of the few that have BFS without exercise intolerance, then try a light exercise regiment or yoga. For those that do have exercise intolerance, do only as much as you feel comfortable doing and nothing more. There is no reason to make life miserable because you "heard" that exercise was good for you. In this case, maybe it isn't "good for you". Pain and fatigue is NOT good and there's no need to aggravate it even more by over doing it.

Are there things that can make BFS twitches worse?
Absolutely! Stress and anxiety will make twitches and other BFS symptoms much worse. Caffeine can make them worse or one’s that have gone away, flare-up. Not getting enough sleep can aggravate them. Drinking alcohol or smoking can make the twitches and symptoms worse, especially if you over do it at the local watering hole the night before. The day after will be pretty bad. Over exertion or too much exercise will make symptoms much worse. “Testing” yourself for strength loss will cause all kinds of symptoms to pop-up and get worse. This includes walking up stairs, doing push-ups and pull-ups, trying to lift heavy things, running, jumping, walking on your heels or toes and all of the other silly things “we” do to test our strength to make sure we aren’t getting any weaker. The reason your symptoms get worse by testing yourself is that you are doing movements and straining yourself in ways that you haven’t done in a long time. It is also due to the frequency of your tests. You might think you only did a couple of push-ups today, and maybe a few heel - toe walks and a quick sprint up some stairs. Well, that right there is a lot more than you have probably done in a long time and it really adds-up. A day or two of testing your strength can really bring-on some pains, aches, cramps, twitches and so on that you will most certainly perceive as more ALS symptoms, when in reality, nothing could be further from the truth. You can cause a twitch to happen sometimes by stretching or yawning. You can cause abdomen twitches by coughing. You can sometimes get twitches right after flexing a muscle real hard and so on. These are all common things with BFS and are nothing to worry about.

Remember;
You are NOT alone with these strange symptoms. There are LOTS of people with the exact same symptoms as you and they carry-on normal lives once they’ve learned to deal with these strange, and sometimes scary symptoms and realize that it has noting to do with ALS at all.. Time is on your side with BFS, because the longer you have it with no serious symptoms (weakness and loss of muscle control mainly), the more likely it is nothing to worry about. Good luck to you!
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Postby Arron on December 9th, 2002, 11:28 am

This is a great post by Liz;

I found these on a neuro site for ALS questions answered by the Cleaveland Clinic. I know others go over there, because I have seen posts from there posted over here, but for those who haven't seen these, I thought I would post them over here. I think they should be reassuring, I just have to make myself believe them. Sometimes it seems harder to believe the obvious and positive than it is to believe the negative horrible things! I feel as though even intellectually I know it is near impossible to have it without weakness it is harder to believe that than I have a horrible RARE disease that Usually only strikes people 15 years older than me. UGHHHH!
without further rambaling, here is what I found...

"The EMG should find abnormalities, IF present, when muscle fasciculations are pathological. This is because, fasciculations only occur late in pathological diseases and therefore the process should and is always present by the time they appear. I have never seen a report where the EMG has been normal and the patient has ALS. This would not be the case in benign fasciculations because they do not occur due to observed abnormal pathology."

"yes muscle weakness must accompany fasciculations to be ALS. It is part of the pathophysiology of the disease, as the anterior horn cells die, they cause the muscle to slowly die and give off fasciculations. The EMG is always positive in ALS, however, the extent of the lesions can vary between patients. I do not understand what the postings were concerning so it is difficult to comment. Have have seen both types of cases, either starting in a particular area or generalized with ALS. I would not give any absolutes as far as fasciculation areas at onset. With ALS, by the time the fasciculations begin there is muscle weakness and in many cases cramping. The EMG is positive for sharps and fibrillations. I hope I have answered some of your questions"

QUESTION
"5 Do random jerks of fingers, arms, mouth signal ALS?"
ANSWER
"5.No"

"Dear Dan:

Fasciculations caused by ALS are due to dying muscle tissue (actually necrotic). So, fasciculations due to ALS are always accompanied by muscle weakness and EMG changes. Benign fasciculation are not due to dying muscle tissue, but irritated muscle membranes. They are not accompanied by muscle weakness, nor are there EMG changes. Fasciculations can be seen in a number of diseases, such as nemaline rod myopathy. So, if there is muscle weakness with EMG changes, then fasciculations are due to a specific disease. When they occur in isolation, they are usually of the benign variety. Any and every neurologist will tell you this.

Whether they occur in specific areas of the muscle is variable. In ALS they can begin in any muscle but usually it is the leg, but it can be the bulbar muscles, arms, etc. This will vary in a particular patient. Since muscle is not dying in benign fasciculations, they tend to be spread out and in a variety of muscle groups. In the early part of ALS they tend to be in specific muscles, more distinct, because the muscle is dying. The literature indicates that benign fasciculations are usually more spread between muscle groups and can worsen with anxiety and fatigue. They can reoccur in the same muscle groups and also be variable."

QUESTION:
"4-WEAKNESS WITH ALS IS NOT MINOR AND PROGRESSES RELENTLESSLY.?"
ANSWER:
"4.Yes"

"Although fasiculations are a characteristic part of ALS, they are also found in other states and can be associated with a benign disorder. Typically, patients with Als are older than 50 years (not 21!). There are childhood and juvnenile forms of motor neuron disease (which mimic ALS but these are often hereditary). If you do not have any associated weakness or wasting, the fasiculations are probably benign."

"The problem with answering a question like this is that many of the symptoms of ALS overlap with other neurologic problems, and if you don't take a systematic approach it is possible to convince yourself that you have the disease based on a few symptoms."
"Usually, ALS presents with asymmetric weakness, often starting in one limb. There isn't much in the way of numbness per se. Weakness may be subtle at first. Sometimes the weakness appears first in the speaking and swallowing muscles before affecting limbs.

"Yes, fasciculations can be a sign of ALS. But they can also be a sign of lots of other processes, such as focal nerve injuries. Don't forget that fasciculations can also be "normal."

"Of course, many people think ALS when they see fasciculations, but more commonly there is a different cause. In young people such as yourself, the most likely cause is "benign fasciculations" - that is, normal."

"Some of the symptoms you have (vibrating, bubbling sensations, etc) are not related to the fasciculations. They are NOT symptoms of ALS, which is a motor disease. In my experience, most people with these symptoms are found to have underlying anxiety. I can't say whether the anxiety is primary (that is, no apparent cause) or secondary (because you are worried about the other symptoms). Many people with anxiety-related symptoms do not experience the usual sensation of anxiety and it may come as a surprise."

". Tongue fasiculations are not a more specific indicator of ALS. "

"Fasiculations in ALS are manifest after denervation (muscle losing its nerve supply) due to injury of the anterior horn cell ( part of the spinal cord). They develop in muscles that are weak.. ALS is a progressive disorder therefore, as more muscle become weak more fasicualtions appear. Of course, some days may be variable with regard to the number of fasciculations (but always present). "

"There would have to be ongoing disease of some time (5-10 months) before one sees obvious fascicualtions and therefore by now, you would have epxressed the neurological exam findings of profound muscle weakness. "

"The normal neurological exam, no muscle weakness with your fasciculations pretty much rules out ALS."

If anyone is still reading this, I hope this helps, there are a million more quotes I can post if you find this helpful, though now my husband is threatening to take my keyboard so I better run. Let me know if ya want more. BTW, every quote on here is from a neuro at the CLeaveland Clinic, though the entire post was not always posted, nothing was changed reworded, altered, etc. Reading this stuff seems to help me some. Though the worry is definently still there, I hope it will lessen with time.
Liz
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Postby Arron on March 18th, 2004, 5:40 pm

ALL of the quotes below were taken from the neurologists at the MedHelp.org web site.

I have to put the quote of one doctor first, because this is VERY important, and it is why you won't see a "definite" answer. They HAVE to cover their butts!

"I try not to say "always" or "never", especially when I'm making a comment on someone I've never seen."

Hence why you always hear them say, “strongly suggests” or “points to”, etc. Now onto the quotes...


"The disease does not affect the person's ability to think. It does not produce abnormal sensations (tingling or numbness) or loss of sensation."

How many of you have other strange sensations? Then it's certainly NOT anything to do with ALS.



"In general, weakness progresses steadily with no periods of improvement or stability and leads to death, usually within 3 to 6 years."

DEATH in 3-6 years. Not twitching for 3-6 years with no major symptoms. Been twitching for a year now? Two years? Well, if it was ALS, you'd be having some pretty MAJOR symptoms by now, for sure.




"The findings consistent with neurogenic atrophy on the EMG is hard to dismiss, and the description of increased irritability on the EMG is consistent with the sort of nerve problem where innervation is gradually withdrawn from muscles.
Your description of fasiculations is also significant as it is further evidence of denervation of muscle."



That says DENERVATION is the cause of ALS fasciculations, which would mean that ALS is present when fasciculations are seen.



"There are several situations in which a muscle may fasciculate. If a nerve to the muscle is damaged, the central control over contraction is disconnected so muscle fibers just sort of go on their own. This "denervation" phenomenon can be seen with injury to specific nerves or in a more widespread condition like ALS."

There's yet another explanation of DENERVATION as the CAUSE of ALS fasciculations. As he so well put it, "sort of going on their own"? Again, if you twitch and it was ALS. the disease would ALREADY be present. Fasciculations in ALS are CAUSED by the disease. Fasciculations are NOT an indicator of ALS UNLESS there is weakness AND denervation shows-up on an EMG, and if twitches are present, the disease is present.



"There are pretty strict requirements for EMG diagnosis for ALS. They include three areas that show definite fasciculations, fibrillations, low amplitudes on conductions studies with a completely normal sensory conduction study. The areas that are included are bulbar, spinal, limb, and facial. If the EMG reports says, completely normal exam, you can be pretty sure you do not have ALS."


"STRICT REQUIREMENTS" in 3 areas of DEFINATE nerve damage. Not a clean EMG, or one that shows a basic fasciculation without any nerve damage. That's a pretty clear statement."



"The criterial for ALS by EMG include 3 different muscle groups with fibrillation, fasciculations, or sharp waves."

There it is again (needs to have 3 different DEFINATE areas) in another answer to someone.



"ALS does not give a patient pain, so I would not think he has ALS. Muscle weakness, fatigue, cramping, without sensory changes, an abnormal EMG that shows positive sharp waves, fasciculations and maybe fibrillations are the hallmark of ALS."

Really, can it get any clearer that that?



"For diseases that affect the neuromuscular system in general such as carpal tunnel syndrome or weakness/numbness related to trauma like a car accident or surgery, the rule is that nerve changes will not show up on the EMG until 3 weeks after the symptoms start. This is NOT true for ALS. Research is showing that there are very subtle changes on the EMG weeks to months before the typical symptoms of twitching (called fasciculations) occurs. What does this mean? Well, when a person comes in with weakness of specific muscles known to be affected early on in ALS like the hand muscles or the neuro exam shows things like brisk reflexes at the same time as weakness and wasting, then doctors tend to think, "This may be ALS, but I'm not sure because he doesn't have fasciculations." Then this person goes to get an EMG and they can see little changes that point to the diagnosis of ALS. However, if you already have true fasciculations whether it's ALS or benign fasciculation syndrome, then that fasciculation will show up on the EMG in the pattern of a fasciculation. If it's just twitching it will NOT show up as a fasciculation, which is a specific, well-described EMG finding that most neurologists should be able to recognize when they see it. So if you're having twitches and they're not showing up as fasciculations on the EMG, then it's probably not a fasciculation."

Did you see what he said? "there are very subtle changes on the EMG weeks to months before the typical symptoms of twitching (called fasciculations) occurs. The rest is pretty clear as well...



"ALMOST ALL patients with fasciculations who have ALS, will have an abnormal neurological examination (i.e. show signs of weakness, atrophy, corticospinal involvement, or bulbar/pseudobulbar involvement) when examined by an experienced neurologist."

That means WHILE they are having twitches, if it was ALS, pretty much ALL people have some kind of TRUE weakness, atrophy, etc, ALONG WITH the fasciculations. Do any of you actually have "clinical weakness" or true atrophy? No. Not that I have read in any of your descriptions anyway.



"If the fasiculations are not accompanied by atrophy or weakness, what is the probability that they are ALS related? Again, I have read that they are only ALS indicative if they are the RESULT of weakness/atrophy. Thus, I'd think that fasciculations in the absence of the other symptoms would be a pretty darn good sign."

Did you get that? "they are only ALS indicative if they are a RESULT of weakness / atrophy". That means that in ALS, dead and dying muscle tissue is AREADY present if you are having twitches, and weakness / atrophy is the CAUSE of ALS twitches! BFS twitches do not "cause" ALS, and if you have no weakness or atrophy, and ESPECIALLY if you have a clean EMG, you do NOT have ALS!!!



"How many people suffer from benign fasciculations, and how often do they last on average? Sporadic fasciculation is incredibly common, occurs in the majority of normal individuals off and on. Some individuals are more perceptive to these twitches and tend to report them, sometimes from fear of having a serious neurological problem. Most experts agree that a subset of individuals have more prominent, widespread, and persistent fasciculation than should be seen normally. These people often diagnosed to have the benign fasciculations syndrome. This syndrome is obviously quite common, but a prevalence figure is not available. One hundred and thirty seven individuals with benign fasciculations were identified and studied at the Mayo Clinic over a period of 28 years. Of these, 121 were available for a follow-up interview after a mean of about seven years; none had developed ALS, and about half had had a significant improvement. Interestingly, about 16% of the cases have a viral infection preceding onset of symptoms, and about 20% have emotional stresses."

That all pretty much speaks for itself...


"ALS usually starts in one limb (or else, in the bulbar- face/swallowing/tongue muscles), and then spreads to other areas."

Does it say random twitches all over your body that come and go? NO. That's because BFS twitches act differently than ALS twitches. ALS twitches start in one place and MIGRATE with the disease from that point-on. BFS are just randome pops and thumps with occasional hot spots. There IS a difference!



"Muscle fasciculations and weakness can be signs of ALS (and many other disorders), however you are having prominent pain symptoms as well which would not be typical of ALS."

How many of you have odd pains and sensations along with your twitching? (tingling, popping, pins and needles, hot spots, cold spots, and so on) A LOT of you do. This is NOT consistent with ALS!



"We worry about fasciculations when they are accompanied by objective muscle weakness, muscle atrophy, and no sensory symptoms."

Again, another answer to support what was said above. No weakness or atrophy associated with twitching meas no ALS.



"In the case where there are no findings of a neurological disease (usually meaning a normal neurological exam, normal laboratory values of routine blood work), a medical history of no chronic neurological diseases or trauma, the diagnosis by exclusion is benign fasciculations. They cause no damage, either muscular or neuronal, and they can wax and wane in their presence. Fatigue and anxiety can make them worse. They can present for days to years. They can be localized or generalized over the whole body. Sometimes they follow a viral illness, but sometimes they just seem to show up."

There are many facts to look at in this answer. To highlite a few; no hard evidence of viral corralation with BFS. Fatigue and anxiety make BFS twitches worse. Do you think dying muscle tissue in ALS gets affected by anxiety or stress? No way! BFS can last for years (which we all know). BFS twitches can be localized (hot spots) or all over the body at random. Really now, have you heard ANY ALS twitches described like that? Nope!



"To answer your questions, yes muscle weakness must accompany fasciculations to be ALS. It is part of the pathophysiology of the disease, as the anterior horn cells die, they cause the muscle to slowly die and give off fasciculations. The EMG is always positive in ALS"

"...as the anterior horn cells die, they cause the muscle to slowly die and give off fasciculations. The EMG is always positive in ALS" That's about as plainly as you can put it! ALS twitches are CAUSED by dying nerve endings AND dying muscle tissue. It is a SECONDARY action to the disease!!! Not a first symptom that causes muscles to die later-on. If you have twitches and it was caused by ALS, you would ALREADY have the disease present in your system which would show-up on an EMG. Twitches without weakness and with a clean EMG are NOT ALS. It can't get any clearer than that!



"With ALS, by the time the fasciculations begin there is muscle weakness and in many cases cramping. The EMG is positive for sharps and fibrillations."

Just more support for what was just said above...




"The EMG should find abnormalities, IF present, when muscle fasciculations are pathological. This is because, fasciculations only occur late in pathological diseases and therefore the process should and is always present by the time they appear. I have never seen a report where the EMG has been normal and the patient has ALS. This would not be the case in benign fasciculations because they do not occur due to observed abnormal pathology."

Again, plain and simple.... Clean EMG = NO ALS!!! As he so well put it "fasciculations only occur late in pathological diseases and therefore the process should and is always present by the time they appear".



"Unless there is EMG evidence, fasciculations are not diagnostic for any disease that we know the etiology of. Benign fasciculations occur without EMG changes or muscle weakness. They go away on their own (most of the time) and do not increase your chances of coming down with ALS."

This just supports what we've said over and over again....



"With the public gaining increasing awareness about the tragedy of ALS, it's understandable that people like you are concerned about the possibility of having the disease when you're experiencing unexplained twitching. Glad that you don't have any weakness as this is usually the presenting symptom/sign of ALS. Twitching is NOT always fasiculations. An experienced neurologist and EMG should be able to distinguish the two. But even if they are fascics, there are other conditions that can cause isolated fasciculations such as benign fasciculation syndrome or thyroid disease. In the setting of ALS, the presence of fasciculations represent degeneration of the muscle cells, which means that by the time you develop them there should already be some other symptom/sign such as weakness."

There are all of the facts again to support what we have been saying all along! If you're still not sure, read the above answer one more time and BELIVE IT! These are answers from TOP neuro's from around the world. This is up to date, ACCURATE info!



"Fasciculations caused by ALS are due to dying muscle tissue (actually necrotic). So, fasciculations due to ALS are always accompanied by muscle weakness and EMG changes. Benign fasciculation are not due to dying muscle tissue, but irritated muscle membranes. They are not accompanied by muscle weakness, nor are there EMG changes. Fasciculations can be seen in a number of diseases, such as nemaline rod myopathy. So, if there is muscle weakness with EMG changes, then fasciculations are due to a specific disease. When they occur in isolation, they are usually of the benign variety. Any and every neurologist will tell you this."

I love that... "Any and every neurologist will tell you this." Any more questions?



"Whether they occur in specific areas of the muscle is variable. In ALS they can begin in any muscle but usually it is the leg, but it can be the bulbar muscles, arms, etc. This will vary in a particular patient. Since muscle is not dying in benign fasciculations, they tend to be spread out and in a variety of muscle groups. In the early part of ALS they tend to be in specific muscles, more distinct, because the muscle is dying. The literature indicates that benign fasciculations are usually more spread between muscle groups and can worsen with anxiety and fatigue. They can reoccur in the same muscle groups and also be variable."

In plain English above... ALS twitches start in one small muscle group and migrate-on from that point, leaving a path of dead, un-usable, atrphied muscles in it's path. BFS twitches happen all over the place (with some hot spots) with NO weakness and NO atrophy. How long have you been twitching now? Isn't it time to just accept that it's BFS and move-on?


"There is no magic time limit of when you should have fascics after the onset of weakness. But in most cases, weakness does precede the fasciculations."

Gee, you think??? If ALS twitches are CAUSED BY dying muscle tissue, then it would be pretty obvious that SOME sort of weakness would be present BEFORE the twitches. At least enough to show-up in a true neuro exam and on an EMG. And with that, WHEN you have twitches caused by ALS, you HAVE ALS present, which means that it will show-up on an EMG.



“Q: In talking to fellow weightlifters, I'm struck by the number of them that report regular twitching while lifting and a fair number that have reported increased activity during rest periods forced by injury. My neurologist says this doesn't make any sense but my primary care doc seems to think there's some connection. He (we) note for example that after laying off weightlifting for several months, I've lost a fair amount of muscle mass. As that muscle atrophies, why wouldn't one expect a disturbance of the cellular, biochemical environment? ANY ideas as to how I could research this topic?” =======

“A from neuro: I agree with your primary doc, I have observed the same in some athletes or people who exercise regularly.”

Atrophy like appearances does (and WILL) happen in muscle that isn’t exercised or used anymore, or as vigorously as it once was. Hence what they said about weight lifters losing muscle mass during times off due to injury, etc. It doesn’t always mean a nasty disease. Is Arnold Swarzinagger still a mass of muscle? No way! I just saw him with his shirt off on TV and it was a flabby, scary sight!



“Muscle fasciculations is extremely common and is benign in isolation. It is only when combined with other symptoms such as atrophy, weakness, increased reflexes, difficulty swallowing or slurred speech, do we even think about ALS.”

“...only when COMBINED with other symptoms...” Not just twitching alone, or NON ALS specific symptoms (pain, pins and needles, fatigue, etc.) if you have any of these odd symptoms, it isn't ALS related!



“Twitches can be seen after excessive exercise, some electrolyte imbalances, and in a benign condition called benign fasciculation syndrome. In ALS the muscle twitches occur in areas were the nerves are being lost. Therefore, muscle twitches typically are seen in muscles that are becoming weak.”

You think???



“Of course, many people think ALS when they see fasciculations, but more commonly there is a different cause. In young people such as yourself, the most likely cause is "benign fasciculations" - that is, normal. Fasciculations occur when groups of individual muscle fibers twitch, but the rest of the muscle does not go along in synchrony. The twitch occurs without the command of the nerve - it's just on its own. Some of the symptoms you have (vibrating, bubbling sensations, etc) are not related to the fasciculations. They are NOT symptoms of ALS, which is a motor disease.”

Twitches alone, and “.... (vibrating, bubbling sensations, etc)” ... “are NOT symptoms of ALS...” Plain enough for you??



“The mechanism of cramps, in general, are not well understood physiologically (meaning with ALS or any other disease). Note that there is a difference between the perceived sensation of cramp and an actual hard contraction of muscle that leaves it quite tight and painful, which is a real cramp. Cramps can be caused by or seen in a number of states such as electrolyte disorders, exercise (especially with dehydration and sweating), pregnancy, overuse/exertional, possibly some enzyme abnormalities, and muscle diseases. As your symptoms were transient and not associated with progressive weakness and muscle wasting, it's unlikely that they represent ALS.”

Common “cramp like” pains associated with BFS are not the same PAINFUL cramps “charlie horse / take your breath away” kind of cramps you get LATE in the ALS disease.



“Usually the patients that we see who have tongue fasciculations have the typical signs and symptoms of ALS that has significantly progressed (prominent weakness and muscle wasting). The tongue fasciculations are NOT the presenting symptom unless they are accompanied by markedly slurred or even absent speech, difficulty moving the tongue due to atrophy and weakness, and profound difficulty swallowing. These patients are quite sick and many of them have had dramatic weight loss due to the inability to swallow.”

So you get tongue twitches? No big deal. Did you read what he said? ...”tongue fasciculations are NOT the presenting symptom unless they are accompanied by markedly slurred or even absent speech, difficulty moving the tongue due to atrophy and weakness, and profound difficulty swallowing.” Do you have any of those symptoms along with your tongue twitching? No. Not that I’ve read from any of you...



“There exists a condition of benign fasciculations, or muscle twitches. It can occur without a knowledge of what induced them or in about 30% they follow a viral illness. They cause not physical damage, but psychologically they can be un-nerving (no pun intended). The can reoccur, they are increased by anxiety or fatigue. They occur in an uncommon disease ALS. However, in ALS there is always muscle weakness and loss associated with fasciculations. If you have no muscle weakness with loss of muscle you do not have ALS.”

See what he said? “...in ALS there is always muscle weakness and loss associated with fasciculations”. “If you have no muscle weakness with loss of muscle you do not have ALS.” ‘Nuff said???




“When people who know about ALS have twitches in the muscles, obviously a concern is whether they have ALS. First, twitching of the muscles is quite nonspecific - some people describe tremors as a muscle twitching; others describe small limb jerking as twitches. But provided only a small part of the muscle twitches, probably the two things that come to mind are fasciculations (as are seen in ALS) and myokymia (which is seen in some conditions but most often around the eyelid when tire or after too much caffeine). If your twitches are becoming more widespread or frequent, you need to see a neurologist for visual characterization of these twitches and perhaps an EMG, which is an electrical test on the nerves and muscles which can characterze muscle activity better. So go and get them evaluated, but here's some things to remember - First, although fasciculations are quite common in ALS, it is UNCOMMON to see them without any other problem - leg or arm weakness, problems speaking and swallowing. Also other things can cause fascicuations - in fact, there is a syndrome called "benign fasciculations" where people just have fasciculations and craps but never develop the symptoms of ALS.”

There it all is again in a nutshell.



“Twitching of muscles called "fasciculations" is a commonly discussed topic on this forum so besides this opinion, you'll want to search the Archive function on "Amyotrophic Lateral Sclerosis" for other opinions. Fasciculations are a common sign of ALS but typically appear with other symptoms of ALS such as weakness, muscle wasting, change in voice, and change in swallowing. If these twitches have been going on for eighteen months without any of these symptoms and with a normal EMG (which can pick up signs of nerve loss even before symptoms in the limbs), it seems highly unlikely that this is ALS. Fasciculations do not only appear in ALS. In fact, there is a syndrome called "Benign Fasciculation and Cramps" which is just that - benign - and often appears in young, healthy patients.”

He said, “it seems highly unlikely that this is ALS”. There’s that first quote I gave you in action. Here it is again... “"I try not to say "always" or "never", especially when I'm making a comment on someone I've never seen."


“Sorry to hear about your twitching. I know that it can be real pain (literally and emotionally true also) as I have these bouts. There is always that little small voice in whatever small hole in our brains that tell us that we have the worst disease based on what we are feeling. It does sound like you have benign fasciculations. In ALS (as you already mentioned) one has painless fasciculations WITH detected muscle weakness. Yes, stress and fatigue can make the fasciculations much worse. This sort of entity feeds on itself in many ways. Good sleep habits, good diet, etc are the best we can offer.”

Just more support of everything we all say on here....



“ALS can present in a variety of ways. There is a bulbar form, distal form, proximal form, asymmetric type, etc. But, there is always muscle weakness.”

Did you see that? ...“there is ALWAYS muscle weakness.”



“I am sorry that your having these fasciculations. Without muscle weakness being demonstrated on neurological exam, a normal needle EMG exam, you do not have ALS. The muscle becomes dead in ALS and the EMG picks up fasciculations and fibrillations. A normal EMG tell you that the muscle is not dead. Once ALS is diagnosed, the average lifespan is disappointly short, 3-5 years. There would have to be ongoing disease of some time (5-10 months) before one sees obvious fascicualtions and therefore by now, you would have epxressed the neurological exam findings of profound muscle weakness. So, again, I do not think you have ALS, nor have we seen anyone with fasciculations and a normal EMG needle exam develop ALS.
Benign fasciculations are really bothersome and cause a great deal of anxiety (which makes them worse, by the way).”


“Without muscle weakness being demonstrated on neurological exam, a normal needle EMG exam, you do not have ALS.”

Man, is that plain, simple and clear!




“You have had multiple examinations by many specialists, all of which have come back normal. At a year, you now still have just fasciculations with no weakness or muscle wasting. I understand how ALS can be concerning as it's a progressively disabling and fatal disease and you have one symptom that is part of the clinical features. But that's just it. It's only one feature that happens to occur in other disease states as well as normal people all the time. I think that it's time to put this behind you, for your sake and your family's.”

This sounds like a LOT of people on here. A YEAR later and STILL worried about something he doesn’t have! Don’t be this guy! Move-on! How much more positive data do you need before you can let-go? If you have NO weakness, NO atrophy, and a clean EMG, get on with life! You do not have ALS! It can’t get any more clear or simple than that!


“Fasciculations are spontaneous twitches of muscle fiber groups that indicate nonspecific irritability of the muscles or nerves supplying them. In and of themselves they mean nothing and do not indicate disease, unless accompanied by more serious neurological symptoms. Benign fasciculations and cramps syndrome is a harmless disorder where a person has such twitches more than others do.”

Did you read that ?? He said, “...they (twitches) mean nothing and do not indicate disease, unless accompanied by more serious neurological symptoms.” Is that clear enough for you?



“Sorry to hear about your twitching. When a source for muscle twitching (fasciculations) is unknown and multiple neurological testing has been found to be normal, we all these benign fasciculations. There is a group of people who twitch after a viral illness and also a group that just begin twitching. Some think that these two groups are linked and there is some sort of viral etiology. But the truth is that we just don't know. The twitching eventually goes away (some people have them for year(s)). Anxiety tends to make them worse. It is a "catch-22" in that the fasciculations may one very anxious and therefore the twitching becomes worse which makes the patient more anxious.... I imagine that pure anxiety might trigger twitches in some patients, only because when some patients receive benzodiazepines, the twitching reduces in frequency.”

Just some more info supporting all of what we keep saying here...



“One has muscle weakness with ALS. Fasciculations without muscle weakness is not in the differential of ALS.”

No.... really?



“By all the exclusions, it sounds that you have what are called benign fasciculations. These events are noted by fasciculations that come and go or can often be continuous. The fasciculations are usually made worse by fatigue, lack of sleep, and anxiety. They are not harbingers of ALS or other muscle disease. However, they are really psychologically draining. Watching your muscles twitch (fasciculate) is really bothersome. We have patients that have had these for years and some only a few days. It is very individual dependent. Some patients respond to low dose benzodiazepines, but many do not.”

Several facts here;
1) BFS twitches come and go.
2) sometimes they are continuous (hot spots).
3) They are made worse by fatigue, lack of sleep and anxiety (and also exertion, alcohol, etc.)
4) Watching you muscle twitch is “draining”... So Don’t DWELL on them!!!! 5) they have patients that have had them for years and some just for days. Every case is individual.
6) some respond to certain meds and some don’t. There is nothing that anyone has found that makes the twitches go away. if they did, it would be called a “cure”. Besides, the meds they are talking about, “benzo’s”, such as Ativan, Xanax, Valium, etc.... of course you won’t feel the twitches as much when you’re on those! Hello??? get drunk and you won’t notice them as much either, because your body is drugged-up and NUMB!! They don’t make the twitches go away, it’s just that you don’t NOTICE them because you are “high” and not as “alert“ as you were before you took the meds.





“Sorry to hear about your fasciculations. Good news is that since you have no real muscle weakness and your EMG is normal, the most likely etiology of your fasciculations, cramping, and anxiety is a condition called benign fasciculations. For the majority of cases we do not know what causes them. In about 30% of the cases it is viral in nature. But the other 70% we do not know. The things that make them worse are fatigue and anxiety. They can come and go, last for hours, days, or even years. We do not think they cause any lasting muscle damage. They are not associated with ALS down the line. Some treat with a benzodiazepam but many do not find relief with medication. Sorry, there is no real treatment. The psychological issues are the worst since we assume that it must be ALS but rest easy it is not ALS. I understand your condition as I get fasciculations myself.”

There he goes again, “...I try not to say "always" or "never"...” when he said, “the most likely etiology of your fasciculations, cramping, and anxiety is a condition called benign fasciculations.” He also said, “They can come and go, last for hours, days or even years.” “They are not associated with ALS down the line”. Are you seeing a pattern here? Are you getting all of this? And again, he said sometimes benzo’s work, (because they make you numb and not as alert) but MANY do not find relief from meds at all. And, the doctor himself appears to have BFS.

The bottom line here is simple, BFS is common, ALS is not. BFS twitches and odd symptoms are in no way related to ALS twitches what so ever, and unless you have several dirty or abnormal EMG's and a specific diagnosis (under strict guidelines), and have no "true weakness or "true" atrophy, then YOU DO NOT HAVE ALS!!
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Suggested addition to BFS symptoms

Postby RexM on March 22nd, 2004, 4:53 pm

Aaron, this nutshell description has been invaluable for me. However, there is one additional symptom of BFS which I believe would be a valuable addition for a significant sub-set of us.
In addition to all manner of twitching, migrating numbness and fatigue, I have had the chronic symptom of pain/sensitivity in the soles of the feet, and have posted on it a couple of times, eliciting seven responses. Additionally, by following the prior posting history of one of my respondents, I found a thread from December 3, 2003 on the same subject started by osbormd.
In summary, there are at least 20 of us who have had this symptom.
Sounds like more than a coincidence to me, especially since twitching man said that his neuro had told him he believes it to be a symptom of BFS.
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Thank you!

Postby AnnieMarie on August 21st, 2004, 5:35 pm

Howdee,

I can't thank you enough for posting this thread. It is the first time in 3 weeks I've been able to somewhat 'chuckle' at my twitching, zinging, vibrating, pulsing, etc.

You see, my mother was diagnosed with ALS in 1995 & passed away in 1998. As her only daughter, and one of her primary caretakers, I don't have to tell you how afraid I was when my twitching started (after a strenuous night of leg work-out at the gym. lol) It started in my inner right knee area...and didn't let up for 4 days. Only thing that made it settle down was laying flat on my back. After 4 days, it disappeared....but all these new little 'buggers' came out in full force. I've been a basket case. It wasn't until stumbling upon this thread, that I thought, "Wow. Maybe this is what's going on!" What is written here & how it is presented is *exactly* what I needed.

I do have an appointment w/an MD (have been seeing my chiropractor 3 days per week since the twitching started) for the end of Sept. Until then, this forum has helped me to relax some. And make no mistake...they are right when they say stress & anxiety aggrivates this condition.

Again, thank you from the bottom of my not-twitching heart. :o

Annie
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Postby Stephanie on August 21st, 2004, 9:17 pm

So sorry about your mother. That must have been hard for you. All of our thoughts are with you. Even with the family history, your chances of getting this disease are incredibly slim. Just about the same as the rest of us twitchers. As you know, twitching without weakness is not a symptom of that disease and excercise does bring on the twitches for most of us bfs-ers. Keep reading our posts-you'll feel better knowing you are not alone.
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Postby Arctic Cat Rider on August 23rd, 2004, 11:38 am

Thank you, Stephanie :)

'rest of us twitchers'

That made me LOL!

Like I said...I was sooo stressed until finding this forum. I'm so glad it's here...for myself...and every other twitchin' soul out there.

**goes off to do more reading**

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Unbelievable!

Postby Jay-mo on November 15th, 2004, 9:57 pm

Again, I am new to this website.

I just laughed my a** off re: "BFS in a nutshell", posted by Arron. This is primarily due to my daily regimen of pushups and toe walking that I've been doing while awaiting my EMG!

Ya'll just have made me feel soooo much better.
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Thank You

Postby juli847 on November 27th, 2004, 6:53 pm

:oops: I cant tell you how good you have made me feel. I have had myself so convinced I have ALS that I actually had to take Anxiety meds.
Question though: Can certain medications cause BFS? Mine started when I started this drug called Topamax. I also was on prednisone for a brochullar infection. Just curious if either of these could cause this?
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Re: Suggested addition to BFS symptoms

Postby christy99 on May 18th, 2005, 3:10 pm

RexM wrote:Aaron, this nutshell description has been invaluable for me. However, there is one additional symptom of BFS which I believe would be a valuable addition for a significant sub-set of us.
In addition to all manner of twitching, migrating numbness and fatigue, I have had the chronic symptom of pain/sensitivity in the soles of the feet, and have posted on it a couple of times, eliciting seven responses. Additionally, by following the prior posting history of one of my respondents, I found a thread from December 3, 2003 on the same subject started by osbormd.
In summary, there are at least 20 of us who have had this symptom.
Sounds like more than a coincidence to me, especially since twitching man said that his neuro had told him he believes it to be a symptom of BFS.


I am sorry to see that this post is from last year because I too have problems with the soles of my feet. That is how I ended up on this board. It all started with my feet. I have an appointment with a podiatrist July the 13th instead of a neurologist first. I feel like my fasciculations are all tied in somehow. I never had cramps, fasciculations until this foot problems started. My soles feel more pain if I walk a longer distance and ALWAYS the first thing in the morning.
I probably should be seeing a Rheumatologist instead of a podiatrist. I am so frigging confused.
Thanks for listening.
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Postby Schuey on May 20th, 2005, 2:25 am

I too have pain in the soles of my feet. They fasciculate constantly and my toes move. My left foot feels like it is permenantly on the verge of cramp.

When I get up in the morning and first put weight on my feet, I get electric shock sensations in the soles.
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Postby christy99 on May 20th, 2005, 6:44 pm

Schuey wrote:I too have pain in the soles of my feet. They fasciculate constantly and my toes move. My left foot feels like it is permenantly on the verge of cramp.

When I get up in the morning and first put weight on my feet, I get electric shock sensations in the soles.



I have the exact same thing. Pain in the soles of my feet first thing out of bed. My toes move off and on mostly when I am trying to relax. I have to be careful of how I move my feet when I am sitting or laying or I can bring on a cramp just by the movement of my toes or feet. If I am busy I don't notice a thing.

I mentioned all that to my doctor and I think that is why he is sending me to a podiatrist first. I do have the option of seeing a neurologist but I haven't scared myself enough yet I think. But you know how can you get that darn *** out of your mind?
I normally would never even go to see a doctor for a cramp or a twitch.
When I think of how rare *** really is I bet it wasn't a twitch or cramp that brought them to the neuro.
Now I worry about atrophy in my left thumb area. I have pain there and have had pain there for about a year.
I thought digits moving on their own was really a bad sign but a few people here have that also. My doctor wasn't impressed when I mentioned it. Actually at that time it only happened twice but it was a HUGE in my mind.
Have a great weekend
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Postby neurodoc on June 4th, 2005, 3:39 pm

I get these pains in my feet... and my hands too.

My right foot constantly buzzes... I felt like an extra from one flew over the cuckoo's nest when trying to describe to my colleagues the sensation of standing on my pager or a vibrating mobile phone, until I found this site! Intially this started as tender soles, esp the arches - I thought I might have plantar fasciitis.

Hand pain is largely settles, but still intermittent problems with the thumb, and feeling like the palm of the hand is going into cramp.
My hands have been particularly troublesome with parasthesia - tingling finger, cold finger, wet spots...
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Postby LeeNC on June 4th, 2005, 10:30 pm

neurodoc wrote:...I felt like an extra from one flew over the cuckoo's nest when trying to describe to my colleagues the sensation of standing on my pager or a vibrating mobile phone, until I found this site! ...


:lol: How many of us here know exactly what you mean....

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Postby g.delalley on April 26th, 2006, 4:10 pm

Arron, I have been freaking out the last few weeks going from *** and M*, I just read your information again, and wow! I am feeling so much better. My toes have been twitching and my leg feeling funny, but I do have all the strength in it as far as I can tell. I strongly suggest people read it again from time to time, as I get different symptoms (cramping) I begin to freak out all over again. I must say you covered everything! Thank you so much again! I am on a extremely low dose of Lexapro, (quarter tablet a day, cause of side effects) it has not kicked in yet, as I am on week two, but I am still willing to give it a try, side effects and all.
But the stress of my worry has been all consuming, pretty much ruling my life! I may have to read this every day, until I get my head on straight. Well just wanted to say thanks again. The information is priceless.. Right now my toes are twitching and my calf is a little cramped and I am not freaking out about it! YEAH! THANKS! Also shout out to SuziQ, she has also eased my mind and been of great help and source of comfort especially with the M*, you guys are great!

I have to go back to my old mantra..... Everyday in everyway I am getting Better and Better!
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