I've been twitching for almost ten months, widespread (both calves and arches, plus random hitters elsewhere). I thought I was over my fears, but it seems they are back.I've been having knee pain, intermittently, for a month or so now. I finally saw a physio yesterday and she reckoned that the knee was probably misaligning owing to 'reduced muscle bulk' in my left quad muscle, just above and to the right of my left knee. She said that the quad on my left leg was 'less bulky' than the quad on my right, and gave me exercises to strengthen it.To say that I freaked would be an understatement. I had got used to the twitches and was beginning to accept the benign diagnosis. But loss of muscle bulk, leading to pain? Surely this has to be a red flag for something?She did not say that I had 'lost muscle' - how could she, given that she had no 'before and after' pic? Nevertheless, she connected the muscle in question to the knee pain. This concerns me.Everyone has told me that ALS doesn't work this way and that it wouldn't hit someone mid-limb. But only this morning I found a post on this board about some doctor in California whose ALS began with 'knee instability'. This did not inspire confidence.It could be that the knee pain, and the muscle bulk loss, is down to immobility over long periods, bad posture or whatever. But my fears are rekindled now and I'm having difficulty putting this into perspective. Does anyone have any comments or observations? I really would appreciate them.
Twitching, Knee Pain, and Physio
- Thread starter Soupy27
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Hi Seepi, I do not know what is 'knee instability'... is that a fact that person can not properly keep connection between knee and a hip because THE WHOLE downward motor neurons were broken dead? Or extra movement of the knee, or whatever? Anyway to have knee problems, a person must also have some troubles with downward muscles, quite prominent I think...Your muscles seems to be not paralysed but just distorted. Left leg is usually less bulky then right (for most of people). Knee is a very easily damaged joint. If you are hypermobile, it can go aside very easily (holy god it is a really painful thing happening to me qute a few times per month...)Combination of those factors may enhance each other. Some pain - from physical trauma - changes in the walking mood trying to spare the leg - decline in muscle strength - weaker or wrongly stretched muscles cause more distortion to the knee, etc. etc. etc.In ALS reduced muscle bulk, as far as I know, is a RESULT of prominent loss of motor function, so, as well as ALS twitches, it comes AFTER paralysis, not BEFORE, in order to decrease the bulk mass, muscles have to be idle for a while. They just could not be wasted in bulk and just be as same good in their function, as before. rememeber again an oldster people and those who were in a cas - their bulk loss si clearly related to loss of the strength. So this is again secondary symptome, evident after a good piece of paralysis, as far as I understand. Unless you do not have other warning signs like deep changes in reflexes, in that leg, or still can fully use it - then probably it is exactly what your chiropratic told to you - your left leg if weaker then the right as it happens with 99 % of humans, but just to the point it causes pain in the knee, so some training might help. Did she mentioned any changes in reflexes?If you have some posture troubles, the difference in the leg strength might be even more prominent (because distorted spine involves all muscles of the back and lower body part, and even chest muscles in qute weird manner), believe me, I spent 4 years in the medical institution for scoliosis chidren and I have observed that by my own eyes...
I know I am not the one you would be most happy to answer but "you have problem doctor don't know and he finds and connects first thing togetwer with other" thing too well to ignore your post and secondly, I know how you fell doctor saying something that scares you, as it threw my all efforts to get better both times (and your doctor wasn't even a neuro specialist so she can not even tell about less bulk thing and what it is if it is).As I have atrophy in hands for god know how long, can I ask you a few questions:1. How did she find the "bulk loss"? Do you see it also?2. Do you have problems with strenght in that leg except for pain?I really don't want you to fell into the trap I felt in. Doctor doesn't know what is wrong and trying to be smart and saying the first thing she/he observes and doesn't know about your twitching and fears.If you would be missing half a muscle you would of known it. If your quad (I suspect you have often twitching there also else you would not be so scared) is thiner, it means nothing. So is my hand. As you said, you don't have (unfortunately) the before picture. And she said "less bulky" not "atrophied" in the first place. I have all one side less bulky. I fear that is the excuse she used because she didn't have a clue of why your knee is misaligned. I know it won't confort you, but I am so misalligned if you look me straight you would say: straighten up 
On of my shoulders is so lower than the other (the "mouse using one"). And guess what: I have neck, shoulder, hand problems and pain. And less bulk on the side it is down.I really fell the less bulk means nothing and that you had it forever, now your knee hurts you went to doctor and she didn't know why and she said less bulk in your quad. If you were not having twitches you wouldn't even be scared a bit. So what, you would say.I know it is hard to look in perspective right now for yourself. You know me, I know how easier it is to look for others.But ALS doesn't start this way with "less bulk", twitching before for 8 months, knee pain etc. It doesn't! You will start feeling this leg is weaker now I guess... Oh dear. That is how a doctor that doen't know scares you, I was there twice and I refuse to go to doctors any more until they carry me. I also have knee pain sometimes and had it for 4 months 1.5 years ago that I hardly bent to tie shoes.I will tell you what you already know down inside somwhere: ALS doesn't start after 8 months with knee pain and a little less bulk, it doesn't. If half your muscle would be missing you would know because you would fell down and you would notice before because I am sure you have been self observing to some degree at this 8 months.You have less bulk, I have atrophy acording to doc and now I have slow twitching there which is wierd to him. If you have ALS I have it two times. Doctor and even you do not know how your quad looks like and I am sure it doesn't look more than a 2-3 difference circum... (don't know the word, around).About the doctor who's ALS started with knee instability. You found it of course. Many started with headaches, some started with fasciculations only (a few), some started sensory also because they have had some neuropathy that was not even connected to the ALS. You know better than me that SOME doctor SOME DAY doesn't even tell what problems he really had. I've read to much time about how someone only fasciculated and when I read the whole story (detailed) I found out that he also had other problems.You will be fine this time also, trust me. I also try some stupid remarks of doctors do not throw me in the pit every time.YoursJerryPS - I was using I's only on comparation because your knee pain/less bulk is a really like my hand atrophy/suspicious twitching (I wonder if it would be suspicious and not BFS like if he wouldn't think there is atrophy).
On of my shoulders is so lower than the other (the "mouse using one"). And guess what: I have neck, shoulder, hand problems and pain. And less bulk on the side it is down.I really fell the less bulk means nothing and that you had it forever, now your knee hurts you went to doctor and she didn't know why and she said less bulk in your quad. If you were not having twitches you wouldn't even be scared a bit. So what, you would say.I know it is hard to look in perspective right now for yourself. You know me, I know how easier it is to look for others.But ALS doesn't start this way with "less bulk", twitching before for 8 months, knee pain etc. It doesn't! You will start feeling this leg is weaker now I guess... Oh dear. That is how a doctor that doen't know scares you, I was there twice and I refuse to go to doctors any more until they carry me. I also have knee pain sometimes and had it for 4 months 1.5 years ago that I hardly bent to tie shoes.I will tell you what you already know down inside somwhere: ALS doesn't start after 8 months with knee pain and a little less bulk, it doesn't. If half your muscle would be missing you would know because you would fell down and you would notice before because I am sure you have been self observing to some degree at this 8 months.You have less bulk, I have atrophy acording to doc and now I have slow twitching there which is wierd to him. If you have ALS I have it two times. Doctor and even you do not know how your quad looks like and I am sure it doesn't look more than a 2-3 difference circum... (don't know the word, around).About the doctor who's ALS started with knee instability. You found it of course. Many started with headaches, some started with fasciculations only (a few), some started sensory also because they have had some neuropathy that was not even connected to the ALS. You know better than me that SOME doctor SOME DAY doesn't even tell what problems he really had. I've read to much time about how someone only fasciculated and when I read the whole story (detailed) I found out that he also had other problems.You will be fine this time also, trust me. I also try some stupid remarks of doctors do not throw me in the pit every time.YoursJerryPS - I was using I's only on comparation because your knee pain/less bulk is a really like my hand atrophy/suspicious twitching (I wonder if it would be suspicious and not BFS like if he wouldn't think there is atrophy).Seepi if its worth anything, 15 minutes before I read your post I was walking around my condo listening to my left knee crack and feel uncomfortable while walking, and shaking my head, and telling myself to ignore it. Like you, I have been trying to lay low for several weeks and see if this thing begins to abate with the "rest" i am giving it.This has resulted in literally hours upon hours of seated position with knees bent, and absolutely zero working out. There is no doubt in my mind that this could play a role in what I am experiencing with my knees. You have to stay active in general or your body does this. I got up and did some typical motions with my dumbbells today and my shoulders cracked like crazy. Those same motions dont cause cracks when I am regularly active. So its definitely related to the sedentary lifestyle (which is oh so unhealthy for the human body) ... at least in my case.Yet we can't kill it at the gym anymore .... or things get worse. I've decided today (probably going to regret this) to at least keep my movements going on a daily basis. Work out like an 80 year old woman. Keep the motions going, even if im doing them slowly. And babying it like crazy. My dumbbell workout today on shoulders and chest was literally with 15lbs in each hand. Im not a big dude, but im usually pressing 70lbs millitary press, so this is a huge downgrade. But its better than doing nothing. If my plan works out (which it probably wont), I will stick with this 15lbs for a week. One set of every exercise. Then consider upping it to 18lbs or something. Slow as a snail. Build strength over time, without fatiguing my body at all. That's the goal.Im sorry I dont have any advice regarding your real question. Im still new to all this and deliberately don't research ALS anymore. But I can tell you this: ALS is not an atrophy condition. Its a severe weakness with atrophy condition. All I do all day is read about people who have muscle twitching, and I've seen numerous other conditions that cause muscle shrinking. We tend to treat ALS like its the only option when its one of a million. I think in the absence of debilitating weakness in the limb, ALS isn't on the table. That's what I've been told at least.
Hehe, you are right. I do not have the third time neuro experience because I won't go until I can show him something serious like I mean falling down or half hand missing. They have scared me too much with the atrophy hand and wierd slow not BFS twitching already, that did a LOT of damage and as soon as I start around the doctors I am in the same pit again, they are not even diplomatic about the atrophy as you told, to see the other hand (the second online one wasn't, concluded it is atrophy and BFS has no atrophy and I guess that made the slow twitch then also not BFS). My WHOLE me is thinner on the left first neuro said, not only the hand so...Let it say this way about your doctor for the muscle bulk... It this happened to you (same remark from her) 2 years ago, would you bother to blink twice? No. You would do excersises. Now you have twitching and you KNOW about ALS such word brings the heck of you. I guess if my first neuro just said atrophy and I would have no knowledge I would just ask, ok and now what 
The fact is for the last 8 years I was to so many doctors for sooo many things and they only found: 1. nothing that would explain my pain, 2. illogical things in my pain as of why the back of the thigh would hurt when I bend it should be the other way around - how woudl I know?, 3. They scared the *beep* of me (sorry the language). My doctor phobia is I guess understandable if you know my history. I am sure they save lives and eveything if you have something that is concrete. If they don't find anything they also find some wierd things...Let me tell you an example from yesterday from my mother in law. She has a slow cancer for 12 years. She got cold 7 days ago and she started coughing. I knew this was from the cold because coughing stays a long time after, but the doctor as she is a cancer survivor patient, wanted to be sure and send her to pulmologist. She took the x-ray and found nothing and he told her he found nothing, but it can also be that the lungs have some metastashes. I mean, did he really have to guess if he found nothing?My neuro could say when he found nothing wrong with strength and my atrophy in hand, that this is probobaly from a long time and nothing significant. They always seem to say that they can not find something but can be anything. My hypohondria doesn't like that. I went to eye doctor because I was having eye infection one after another. She really needed to check my eye pressure and it was too high and she sent me to the field vision test and there way ONE GREY DOT. She really needed to say this can be glaucoma. Obviously she didn't know! She sent me to glaucoma clinic and after 4 months of waiting (imagine my state in mind!) the glaucoma expert told me a little too high preassure, no field damage and the grey dot is INSINIFICANT, black dots matters.Now I do not go to doctor for such stupid remarks if I have some pain here and there, like a knee pain or shoulder pain or something. If they don't know wierd things they start to say... When half my muscle will be missing or thing start falling from ma hand or I fall down, then I go. The rest is the guess, his is as seems as good as mine why my arm is tremoring every morning.I was telling you this my and my mother in law stories to see how even a well intendd remark can make a mess. And we can also misinterpret it, maybe the pulmologist tried to say he found nothing wrong but could have been metastases if he would. Mya first neuro couldn't say to me I can not have ALS but he told me I can not have BFS, but maybe for him BFS is just something that can be measured by some test (he told a part of this so I suspect) and he could not say I don't have it because everybody can have it at any time, even with No symptoms and he just couldn't say it. And I immediately took the worst part on.I feel you are much calmer today from your neuro exam, I think it calmed you down anyway from that knee problem. About the knee I can not give you a good advice, if she didn't find anything (just the muscle thing ) that it will probably go away in months time, as my joint pains usually do and if it not red or swolen there is no rheumatism and ... 2 years ago you would not think 2 seconds about it (for fear, it obviously hurts you physically).Thank you about the nice words though about me. When my head is a little out of the pit I guess I can be helpfull, but when I am under I just cry for help. Oh well, I am glad it is better for you and the doctors remark isn't affecting you any more.Take care!
The fact is for the last 8 years I was to so many doctors for sooo many things and they only found: 1. nothing that would explain my pain, 2. illogical things in my pain as of why the back of the thigh would hurt when I bend it should be the other way around - how woudl I know?, 3. They scared the *beep* of me (sorry the language). My doctor phobia is I guess understandable if you know my history. I am sure they save lives and eveything if you have something that is concrete. If they don't find anything they also find some wierd things...Let me tell you an example from yesterday from my mother in law. She has a slow cancer for 12 years. She got cold 7 days ago and she started coughing. I knew this was from the cold because coughing stays a long time after, but the doctor as she is a cancer survivor patient, wanted to be sure and send her to pulmologist. She took the x-ray and found nothing and he told her he found nothing, but it can also be that the lungs have some metastashes. I mean, did he really have to guess if he found nothing?My neuro could say when he found nothing wrong with strength and my atrophy in hand, that this is probobaly from a long time and nothing significant. They always seem to say that they can not find something but can be anything. My hypohondria doesn't like that. I went to eye doctor because I was having eye infection one after another. She really needed to check my eye pressure and it was too high and she sent me to the field vision test and there way ONE GREY DOT. She really needed to say this can be glaucoma. Obviously she didn't know! She sent me to glaucoma clinic and after 4 months of waiting (imagine my state in mind!) the glaucoma expert told me a little too high preassure, no field damage and the grey dot is INSINIFICANT, black dots matters.Now I do not go to doctor for such stupid remarks if I have some pain here and there, like a knee pain or shoulder pain or something. If they don't know wierd things they start to say... When half my muscle will be missing or thing start falling from ma hand or I fall down, then I go. The rest is the guess, his is as seems as good as mine why my arm is tremoring every morning.I was telling you this my and my mother in law stories to see how even a well intendd remark can make a mess. And we can also misinterpret it, maybe the pulmologist tried to say he found nothing wrong but could have been metastases if he would. Mya first neuro couldn't say to me I can not have ALS but he told me I can not have BFS, but maybe for him BFS is just something that can be measured by some test (he told a part of this so I suspect) and he could not say I don't have it because everybody can have it at any time, even with No symptoms and he just couldn't say it. And I immediately took the worst part on.I feel you are much calmer today from your neuro exam, I think it calmed you down anyway from that knee problem. About the knee I can not give you a good advice, if she didn't find anything (just the muscle thing ) that it will probably go away in months time, as my joint pains usually do and if it not red or swolen there is no rheumatism and ... 2 years ago you would not think 2 seconds about it (for fear, it obviously hurts you physically).Thank you about the nice words though about me. When my head is a little out of the pit I guess I can be helpfull, but when I am under I just cry for help. Oh well, I am glad it is better for you and the doctors remark isn't affecting you any more.Take care!I didn't read the other posts above, but I can tell you that I have a left calf and quad that is noticeably smaller than the right, and a right bicep, forearm, and pectoral muscle that is noticeably smaller than the left. Never noticed any of this in 43 years, until 7 years ago when head-to-toe fasciculations called my attention to my muscles. Seven years later and I've gained muscle, including 1/2 inch in my calves--yet the asymmetries remain. Besides that, I've had intermittent knee, hip, wrist and shoulder pain sometimes lasting many months. As I recently commented in another thread, bfs messes with my joints big time. Nothing in your post is concerning, and I wouldn't worry about just one quad--moderate daily exercise for your whole body (walking, pushups, sit-ups, etc) is good period. Don't worry about normal asymmetries.Cheers,Bill
illusaxive
Member
I`ve got no ALS but I`ve got both atrophy and faciculations. I first got real scared when I fell over running/jumping on a mountain trip when I usually would have no trouble standing. This was in the autumn and I`ve had the twitches since the last winter. I started wondering and examined my left foot which seemed to be a bit weaker than the other. It was quite easy to see the atrophy already then. I think this must mean that I had had some kind of pareses/muscle weakness for quite some time. So for me the twitching came a long time after the muscle weakness. The atrophy started all the way out in the foot, I guess just like it would in ALS and has since spread slowly (much slower than in ALS) upwards, my left calf now being quite notable smaller and much weaker than the other (know my body well from athletics, volleyball etc.). For me there has been no doubt that the muscles have grown smaller. There has been a noticeable difference, not like my right biceps being stronger og bigger than my left the way it always has been. Here is a little video of my feet. The left leg has been almost exactly this way for about four years now. If it was ALS (was just nerves being strangled by a tumor) I guess I wouldn`t been able to move it at all. Though it looks a bit pathetic now anyway 
Seepi27, I have been experiencing unexplained back, knee and elbow pain in the past 2 months. Been to the orthopedist three times and been under physiotherapy. All x-rays are fine; there is no edema and no signs of inflammation. The pain migrates. There are days when the left knee aches more than the right one, and vice-versa. There are days when the lower back aches and others that the upper back aches. It is definitely nerve induced pain related to the BFS! Best thing you can do is stretching and not to worry about serious things.