Aa
Still scared....
I posted a few weeks back about being "scared to death....". I do appreciate everyones input and support. And a big THANK YOU to the Doc's on this forum, they are great. Anyway......I am still a bit scared. I had a needle EMG on my calves and right arm and the NCV done on all four limbs on 12/31. What he told me was that I have slight Diabetic Neuropathy in my feet (I am a Diabetic) and slight Carpel Tunnel in my right hand which is all caused by the Diabeties. NO ALS SIGNS. I do not have any sensory problems in these areas, but I now (recently) get frequent cramping in my feet. This is where the twitching is non-stop. My questions are:
1) Can the Diabetic Neuropothy be causing this easy cramping and twitching?
2) How do you know if your feet are getting weak? I can walk on my heals and walk on my toes being barefoot, is that sufficient?
3) Is the Neuropathy normally seen on the conduction portion of the EMG or could he have mistaken this from when he did the needle portion and I actually have early signs of ALS?
4) When the Doc did my needle portion of the EMG, he said they normally don't do the feet due to the repetative trauma that happens in the feet and is not really a good measurment. Is this true?
5) ALS really terrifies me. I have been twitching constantly for 5 months, especially in my feet. Would I have DEFINITE symptoms of weakness after the 5 months of twitching in my feet?
6) Is there a cramping characteristics that go along with a neuromuscuar disease verses a normal, everyday cramp?
Thanks in advance for your comments,
Brian
1) Can the Diabetic Neuropothy be causing this easy cramping and twitching?
2) How do you know if your feet are getting weak? I can walk on my heals and walk on my toes being barefoot, is that sufficient?
3) Is the Neuropathy normally seen on the conduction portion of the EMG or could he have mistaken this from when he did the needle portion and I actually have early signs of ALS?
4) When the Doc did my needle portion of the EMG, he said they normally don't do the feet due to the repetative trauma that happens in the feet and is not really a good measurment. Is this true?
5) ALS really terrifies me. I have been twitching constantly for 5 months, especially in my feet. Would I have DEFINITE symptoms of weakness after the 5 months of twitching in my feet?
6) Is there a cramping characteristics that go along with a neuromuscuar disease verses a normal, everyday cramp?
Thanks in advance for your comments,
Brian
i have bf and diabetes, i believe that the two can be related. Completing all your exercises I'm surprised you have the energy to log on to the www!
good luck
good luck
I am feeling ok. I still have tons of twitching and numbness. One neurologist has mentioned myasthenia gravis but I don't have the symptoms for this. I wish people would read the posts you and Bman have written! They would not have to ask the neurologist the same question. Thanks again. How are you feeling? Thanks again for your great posts!
How is everybody feeling?
Sorry...MDS45 not 25 :-)
CHEERS MDS25....Thanks so much!!!
i have had twitching for 9 months now- have had every test in the book. My first neuro told me i had an unknown neuropathy- i just had an emg done last week with a diff neuro and he said I show no signs of neuropathy and that if the office is cold it will throw off the test. I am still waiting for actual results but he said I do have carpel tunnel in right arm but it would not cause all the fascics I have all over the body and the cramping in my calves and feet. He said I have Benign Fasciculation Syndrome or "Snap Crackle Pop" disease which there is nothing they can do for but stay on more meds(Im on neurontin)
I told him I went from being extremely athletic to not being able the walk for more than 20 minutes without having to sit down. He told me that usually he sees this condition in people who have been very athletic in their lives. I wish i would have been drinking and smoking the last 15 years like my friends then none of this would be happening!!! My neuro thinks that all the fascics are benign and not a pre-cursor to something more serious- which is great but you just dont go from good to worse in 9 months without something being terribly wrong no matter what the tests say!!! They think that Im having everyday cramps and charlie horses-when actually im being thrown to the floor screaming in pain and holding my leg which I can only describe as a heart attack to the muscle. I wish these docs would look at you and listen instead of interrupt you mid sentence and look at you like you dont know whats going on with your own body. I am extremely frustrated with all this and do not know where to go from here. If anyone else out there hasever found out whats wrong with them let us know- i have yet to see anyone on these forums that have ever gotten better despite thousands of dollars in tests and office visits. thanks for listening. mwb
I told him I went from being extremely athletic to not being able the walk for more than 20 minutes without having to sit down. He told me that usually he sees this condition in people who have been very athletic in their lives. I wish i would have been drinking and smoking the last 15 years like my friends then none of this would be happening!!! My neuro thinks that all the fascics are benign and not a pre-cursor to something more serious- which is great but you just dont go from good to worse in 9 months without something being terribly wrong no matter what the tests say!!! They think that Im having everyday cramps and charlie horses-when actually im being thrown to the floor screaming in pain and holding my leg which I can only describe as a heart attack to the muscle. I wish these docs would look at you and listen instead of interrupt you mid sentence and look at you like you dont know whats going on with your own body. I am extremely frustrated with all this and do not know where to go from here. If anyone else out there hasever found out whats wrong with them let us know- i have yet to see anyone on these forums that have ever gotten better despite thousands of dollars in tests and office visits. thanks for listening. mwb
Have you gotten any weaker? When this all started with me I started hitting weights and it has done wonders for my anxiety. Regarding you haven't heard about anybody getting better, the other forum has a few people that symptoms has gotten better and some that went away.
Thank You
Your post is one of the best I have read on this board. I have been to several Neurologist. I really appreciate the way you explained that. It is people like you and the neurologist who make this board such a value source of information. Thank You again for taking the time to post. As a professional stock trader if their is anything I can do for you let me know.
Your post is one of the best I have read on this board. I have been to several Neurologist. I really appreciate the way you explained that. It is people like you and the neurologist who make this board such a value source of information. Thank You again for taking the time to post. As a professional stock trader if their is anything I can do for you let me know.
neither I or my docs have noticed any sign of weakness, just fatigue when I walk for any extended period of time. I have not been able to do any sort of exercise since this started- my cramps are too severe and my fascics go off the charts. i have resorted to basically starving myself so i do not gain any more weight since I have not been able to do any exercise at all- lucky I have a desk job or I would not be able to work either. I've gained like 15 pounds in the last 9 months and have lost about 10 of that since I've started to diet my way down since that is the only option I have for right now. Like I said I am at my wits end and have given up on finding whats wrong with me. I know its probably something really simple that everyone is overlooking but as long as I have insurance these docs are gonna keep running the most expensive tests they can that dont do squat for me. Well thats all for now- even though my life is over maybe someone out there will find out whats wrong and let us know.
Man, if you have been twitching for 6 and 7 months and have made muscle and strengh gains I seriously doubt you have als. Have you had a emg perform on you? Here is something I copy and paste from anothe forum.
Someone's neuro here told him/her that visible twitches were more indicative of ALS. I don't know where this neuro studied neurology, but even I know that is ridiculous. I know this because I discussed this extensively with my own neuro, and I'll put his credentials up against just about anyone's. He started, and still heads, a neurologicial association in a large medical center here in Houston. He went to Baylor College of Medicine, worked for several years at the Mayo, and serves on the AMA policy board. This is the 4th largest city in the country and his association sees a significant portion of the ALS cases that occur here every year.
First off, he saw lots of visible twitches throughout my body. No big deal, according to him. In fact, the only reason he gave me an EMG was because of my reflexes, which were slightly brisk. The twitches meant nothing to him.
I asked him to explain to me what an ALS twitch was like, and we ended up in a discussion of fascics and myokymia (I have both). This is coming from memory, so I'll try my best to tell it as I remember it.
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!
The point I'm trying to make is that whether you can see your twitches or not, you still can't make any conlusions. Everyone twitches. Everyone. Some more than others. What you should watch for are things like falling down constantly or atrophying limbs--and even THEN you are likely not to be diagnosed with it (another story, but I know a girl who has had severe weakness and atrophy in her hand for years and the doctors have definitively ruled out ALS, saying they think it's a viral infection of the brain stem).
Myokymia differs from fascics because there is no nerve (in our case, probably an inflamed nerve) involved in the muscle movement. It is a sort of a wormlike movement of the muscle fiber, and is in no way indicative of anything even remotely serious. Perfectly healthy people have myokymia from time to time. I can describe it best as a rumbling feeling (usually in my quad or hamstring) that rumbles for maybe a few seconds and then goes away.
Now, onto something else. I spoke to a family member this weekend who has long been diagnosed with osteoarthritis and FIBROMYALGIA, and she said her symptoms are twitching, being easily fatigued, muscle soreness, and muscle stiffness (especially in the morning). Sounds a lot like what I have and I suspect a lot like what others here have. It's an inflammation of the nerves in her body, and maybe that is why some here have noticed decreased twitching when taking things like anti-inflammatories.
I'm sure someone will read this and freak out. Just try and remember that if you are already twitching, without serious (the kind of weakness that TELLS you you are weak, not the kind that makes you wonder if you are) weakness and muscle wasting, each day is a day on your side and a confirmation of the benign condition we've been diagnosed with. I asked my neuro in a 12 month follow-up if my twitches from the year prior were ALS-related, would I definitely be having serious muscle weakness, etc., by then and he gave me a very resounding "definitely." It's just a waiting game, really, but it's one where time is on your side.
Someone's neuro here told him/her that visible twitches were more indicative of ALS. I don't know where this neuro studied neurology, but even I know that is ridiculous. I know this because I discussed this extensively with my own neuro, and I'll put his credentials up against just about anyone's. He started, and still heads, a neurologicial association in a large medical center here in Houston. He went to Baylor College of Medicine, worked for several years at the Mayo, and serves on the AMA policy board. This is the 4th largest city in the country and his association sees a significant portion of the ALS cases that occur here every year.
First off, he saw lots of visible twitches throughout my body. No big deal, according to him. In fact, the only reason he gave me an EMG was because of my reflexes, which were slightly brisk. The twitches meant nothing to him.
I asked him to explain to me what an ALS twitch was like, and we ended up in a discussion of fascics and myokymia (I have both). This is coming from memory, so I'll try my best to tell it as I remember it.
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!
The point I'm trying to make is that whether you can see your twitches or not, you still can't make any conlusions. Everyone twitches. Everyone. Some more than others. What you should watch for are things like falling down constantly or atrophying limbs--and even THEN you are likely not to be diagnosed with it (another story, but I know a girl who has had severe weakness and atrophy in her hand for years and the doctors have definitively ruled out ALS, saying they think it's a viral infection of the brain stem).
Myokymia differs from fascics because there is no nerve (in our case, probably an inflamed nerve) involved in the muscle movement. It is a sort of a wormlike movement of the muscle fiber, and is in no way indicative of anything even remotely serious. Perfectly healthy people have myokymia from time to time. I can describe it best as a rumbling feeling (usually in my quad or hamstring) that rumbles for maybe a few seconds and then goes away.
Now, onto something else. I spoke to a family member this weekend who has long been diagnosed with osteoarthritis and FIBROMYALGIA, and she said her symptoms are twitching, being easily fatigued, muscle soreness, and muscle stiffness (especially in the morning). Sounds a lot like what I have and I suspect a lot like what others here have. It's an inflammation of the nerves in her body, and maybe that is why some here have noticed decreased twitching when taking things like anti-inflammatories.
I'm sure someone will read this and freak out. Just try and remember that if you are already twitching, without serious (the kind of weakness that TELLS you you are weak, not the kind that makes you wonder if you are) weakness and muscle wasting, each day is a day on your side and a confirmation of the benign condition we've been diagnosed with. I asked my neuro in a 12 month follow-up if my twitches from the year prior were ALS-related, would I definitely be having serious muscle weakness, etc., by then and he gave me a very resounding "definitely." It's just a waiting game, really, but it's one where time is on your side.
I am still worried I have ALS also. I started to have the twitching back in July or August. My chief complaint now is twitching and problems with my throat. My strength has gone through the ceiling. Ever since I was 16 my goal was to bench 300lbs. I was stagnet at 40-50 push ups. I am now 35 years old as of today. Yesterday I repped 235 15 time which is unheard of for me. I pressed 305 with total ease. This has all taken place since the panic of als has set in. As for pushups the other day I did 120. I keep thinking about Bulbar onset because of my throat problems and hoarse voice I have had since NOV. I am taking ativan for this anxiety. I am just wondering whethter I have a slow bulbar onset or what? Some of my muscles stay sore all the time. One thing I was reading about twicthing is they can be caused by a calcium defecientcy. I do not know what to do. I am afraid I am going to lose my job. I have been out for several months. I hope you feel better soon. I was wondering if I could pay one of this neurologist on the board to be a consultant for me. I need ideas and am willing to pay the going rate. Since they are at the teaching hospital I know they have seen alot. Since I am on the West Coast right now it is not feasible to fly out there.
1.Cramping and twitching/fasciculations can certainly be part of chronic diabetic neuropathy. But there are many, many other conditions and disease states that can cause cramping.
2.The muscles we usually test in the feet are those used for toe walking (which you said you can do), pushing down on the gas pedal,turning your foot inwards and outwards, and moving your toes up towards the head and downwards like a grip. A neurologist should be able to find the weakness if there is any on exam.
3.Yes, the neuropathy is picked up on the nerve conduction part which measures the time it takes for the message to go along your nerve from the stimulus. Longer times is what is usually found in diabetic patients with neuropathy, a very common complication.
4.Every EMG lab is different and there are specific things we check for different diseases. We usually do one or two in the feet as part of a routine leg exam. BUt it's true that normal people can have EMG changes in their feet in the absence of disease due to the normal wear and tear due to shoes/walking/etc..
5.Typically yes
6.Yes, the situation, location, timing and extensiveness of the cramps are all helpful features to distinguish the pathologic from the benign. Normal cramps can occur with exercise, stretching, after a strenuous day, neuropathy, pregnancy, dehydration, and kidney disease for patients on dialysis. Persistent cramping of truncal muscles or continuous generalized muscle stiffness are more consistent with pathologic diseases.
2.The muscles we usually test in the feet are those used for toe walking (which you said you can do), pushing down on the gas pedal,turning your foot inwards and outwards, and moving your toes up towards the head and downwards like a grip. A neurologist should be able to find the weakness if there is any on exam.
3.Yes, the neuropathy is picked up on the nerve conduction part which measures the time it takes for the message to go along your nerve from the stimulus. Longer times is what is usually found in diabetic patients with neuropathy, a very common complication.
4.Every EMG lab is different and there are specific things we check for different diseases. We usually do one or two in the feet as part of a routine leg exam. BUt it's true that normal people can have EMG changes in their feet in the absence of disease due to the normal wear and tear due to shoes/walking/etc..
5.Typically yes
6.Yes, the situation, location, timing and extensiveness of the cramps are all helpful features to distinguish the pathologic from the benign. Normal cramps can occur with exercise, stretching, after a strenuous day, neuropathy, pregnancy, dehydration, and kidney disease for patients on dialysis. Persistent cramping of truncal muscles or continuous generalized muscle stiffness are more consistent with pathologic diseases.
I know how you feel exactly. I started twitching Oct 2 2001. I was scared to death. I couldn't sleep, lost weight and almost quit my job. My twitching has mainly been in my calves and foot with randoms twitches in my back, arms and legs. I had a emg done about three weeks into the symptoms. It said it was normal but did note a few burst which he claims he has seen before. A year before this happen I used to lived in the gym and was strong. I decided to stop lifting weights and went from 173lbs to 162. I then lost 6 lbs when this twitching started. After my appointmet I decided to hit the gym again. My max on bench was 190. I now weigh 185lbs and have increase my bench to 300lbs. It helped my anxiety. I do still get some cramping in my foot and hands and my left wrist gets stiff when I'm typing but I don't think I have als. If so, it's very atypical. I have research it very heavily and if the twitches are from als then the muscle breakdown has started about 6 months before. Also, they say the a person could lose half of muscle before you would notice weakness. Also, a general rule is if the muscle that has twitching doesn't have atrophy or weakness then it's beneign. Now a emg should pick up something or in my case, getting stronger and building muscle would rule out als. I have something but I doubt it is als. Go buy some hand grips and do them every other day. Do some calf raises.
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