I wanted to let you know how my neurologist appointment went. He started out by saying that no doctor can say you don't have ALS because it's kind of a disease of exclusion, and it's not an easy thing to diagnose. He said with the symptoms that I'm having, which is twitching, that it's kind of a "wait and see" thing, because of course with a benign condition, it wouldn't progress, but with ALS, it would progress. The thing is, ALS is rare, and it's at the very end of the spectrum of things that can cause twitching. He said that twitching with ALS can present in almost any way, it's different with each person, but generally, it's a persistent twitch that dosen't go away, and it's usually accompanied by weakness, which I don't think I have. The neuro exam he did in the office today was normal.
There are other things that can cause twitching that he wants to focus on, that are more common. One is a sleep disorder, which I do have sleep apnea problems, and he said that any sleep problem can cause twitching during the day. Also, I have blood sugar problems, and he said that early diabetes can cause twitching. He said it dosen't really matter as far as what the doctors can do if it is ALS, because there is no therapy that I'm missing, that there isn't much you do anyway. Also, he said that the twitching with ALS is usually where the patient dosen't even feel it, but you can see it, especially on the shoulder area, and thighs. So, time is on our side, every day that goes by we all should feel a little better if we are not progressing too rapidly. He said it can be caused by anxiety, and that med students who are learning about ALS, always have twitching symptoms suddenly. So, it definitely does feed on itself. He said he didn't want to do an EMG test, because it's painful, and it wouldn't make any difference. So, now I'm doing blood work with him, and then a sleep study.
I hope you are all doing well! Thanks, Val
Well I was told that I did not have any progressive neuro disease back in 2004 so far as I can tell, on the basis that I did not have any abnormal reflexes (if you can call a reluctance to give any reflex at all normal) it took nearly a year before I got the EMG and nerve conduction tests, which I agree were not pleasant, but damn it, I did have abnormal reactions on that, so had I not have been sent (NHS being what it is) for test something would have been missed.
I suppose waiting it out is the only thing, which is why it does not please me now, waiting it out again.
I don't think anyone will ever figure out my fascics, that is probably beyond known science because whatever reason is suggested would probably not apply on every occasion I have experienced such.
Have things changed since 2004? yeah well they have, my left foot is screwing up agin, and my tongue has developed a tremor.
I know the waiting game is hard, but it's also one of those things that we have to kind of get in the right frame of mind about. I will admit that I'm sort of a hypochondriac, and worry about every little symptom that I get. So, now it's hard to get into a different mindset, and just kind of take it like it is. I can't get worried about the twitches, instead, just let them happen, and try not to stress about it, and realize that most of the time, these twitches in people are benign. ALS really is rare, and the thing is, I think people with the twitches such as myself, jump to thinking about that, because of how scary it is. But, there are many other things, of course some we don't even know about, that cause twitching. It's so easy to get fixated on symptoms, I've done it so many times.
This doctor made me feel better today, because even though he said that this could be early ALS, he really has no way of knowing, he kind of put it in perspective, and said that there's nothing that can be done for it anyway, and just to wait it out. Also, he said that there are so many people that get this thing, and sometimes they never know. I think I told you about how he said that med students always get the twitching as they are going through the learning part on ALS. I'm an anxious person about my symptoms, and I think that most people that have this are. I've had heart palpitations for years, and they used to drive me crazy with worry, now I just live with them, without worrying about it. It's amazing what you can make your mind do. Try to relax and realize that you most likely do not have this rare disease, and enjoy each day. I've wasted a lot of time worrying about diseases that I was sure that I had, for it to end up being nothing. I would drive the people around me crazy convincing them I had every symptom of some terrible disease. As the doctor said today, everyone has a bullet with their name on it, it's just when. So, enjoy now, and try not to worry about the future. Also, be as healthy as you can, by exercising, eating right, sleeping right, and you'll feel great. I think I also mentioned how he said that not sleeping right will cause twitches, and I definitely don't sleep right. He wants me to go for a sleep study, and I don't even think I can do it, I will probably be staring at the ceiling all night long driving someone crazy! Anyway, talk to you soon~~Val
Muscle twitching and fasciculations can be caused by low levels of magnesium within the muscle and nerve cells.
This can also cause parasthesias, or odd skin sensations, such as the feeling of insects crawling or tingling.
There is alot of information available about the importance of magnesium. Carolyn Dean has written a book (you can do a search for her books on Amazon.com.)
As magnesium is difficult for the intestines to absorb, you need to supplement with one of the forms such as glycinate. You'll need to read the ingredients list for this.
Magnesium can also help anxiety and depression.
As for sleep disorders, they are a symptom of something else that is wrong.
In my case, I had insomnia and I wasn't getting into stage 4 sleep, which is when the body releases human growth hormone. This meant the muscle wear and tear wasn't getting repaired, and I always woke up feeling like I had been hit by a truck. I was diagnosed with fibromyalgia, but 15 years later found out that it was actually due to infection with Lyme bacteria.
Try supplementing magnesium. You can eat almonds, which are naturally high in mag. Magnesium is also available as an injection and as intravenous solution.
and thanks so much for all the very valuable information! I had tried taking a magnesium supplement when the twitching started, after reading that it may help. I just took a supplement I bought at my local grocery store, it was 250 mg. I actually stopped taking it, because it didn't help, and I was actually noticing things getting worse, not that it was due to the magnesium, but I was trying everything.
Is it possible to have a magnesium deficiency even when taking a supplement as I did? So, also, you do agree that things like sleep disorders, magnesium deficiencies, and anxiety for example are all things that are more likely to cause twitching than ALS? I wonder sometimes why so many people seem to get fixated on ALS that have twitching~~~do you think it's because twitching truly is a first sign of ALS, or just that it is such a scary disease? I think it's the fact that it is scary, because everything that I've read so far, and after my visit with the neurologist, suggests that twitches aren't even really commonly a first sign. I don't see the connection sometimes, but maybe I'm wrong. It seems like ALS begins usually with weakness, or other more obvious things than twitching. I do think, though, that twitching is an aggravating and anxiety-provoking thing, and that can lead to more symptoms, etc.
Thank you so much for the information on magnesium! Also, it's helpful to know your experience with the sleep disorder. I do know that I have sleep apnea, but not all the time, at least as far as I know. I don't wake each night, but often, and usually when I'm stressed about something.
Thanks again so much! Val
Hi Val...it's been a while since we have corresponded. So glad to hear you finally had your neuro visit. It sounds as if he confirmed what we all suspected. The benign causes of such conditions are always overshadowed by the more serious possibilities. My dr. told me the same thing that you were told about med students. He said there has never been a person complete med school that didn't fear he/she was dying at some point. I think you should take the advice of your neuro and relax for a while. You may be surprised to find the symptoms relieve themselves when the worrying stops. If not, then you can continue to seek answers. If you will recall, many of our symptoms were similar. I recently took a muscle relaxer that had been prescribed for my daughter...slept through the night and felt better the following day. That gave me hope that my symptoms were a result of my insides being tied up in knots...not to mention the condition of my poor brain. I have had a number of good days so I'm trying to get on with life. Best Wishes to you!
I never received a true diagnosis. I did have an MRI w/wo contrast and it was normal as was the clinical evaluation. At that time, I had not begun to experience the twitches and vibrations. I only had pressure in my head and ears with fatigue and numbness in my limbs on occasions. I have not been to the dr. since the twitches began. I have to believe that it is something to do with stress and anxiety. As I told you earlier, a muscle relaxer relieved it for a day or so...therefore I'm hanging on to that. I also have days when I think positively and then there are those other days. I know what you're going through, Val....but I continue to think of all those posting on this forum with similar symptoms. Surely, we don't all have ALS. I think we just all fear ALS. Keep in mind that it is an extremely rare disease with many conditions that mimic it. My neurologist was very unconcerned, but once again, he doesn't know about the twitching. Did I tell you about the day that he sent me to radiology for an MRI and when I arrived the receptionist handed me the order to take to the radiologist and the diagnosis box read "brain tumor". I learned later that was for insurance purposes. That may have been where the twitches began:) Anyway, I hope you will find peace about this until there is more of a confirmation. Take care and hold on to the positives (no muscle weakness, muscle wasting...and remember those things normally present before the twitching from what I understand...I'm not sure bad knees qualify as weakness, but then I'm no dr. God's blessings,Val.
P.S. I think you need a pick me up from Kid Coconut. Where has he been hiding?
Thanks for the responses! Skyhag, are you still having twitching? I am not sure I recall after reading so many posts, did you ever have an actual diagnosis? I was kind of worried when the neurologist wouldn't really give me a definitive answer, do you think alot of them do that? He right off, before he even examined me, said that he can't say either way, whether it is ALS or not, that only time will tell. I appreciate what he is saying, but it can make an anxious person even more so, and sitting here waiting for the symptoms to get worse. I really am trying to be proactive about my health, and doing all the right things. Sometimes when I think about it, though, I don't think the twitches are caused by anything like a vitamin B12 deficiency, cause I don't think I have that, and he also mentioned the neuropathy thing, since I've had blood sugar problems for quite a while now, but when I looked that up, the symptoms of Diabetic neuropathy are usually pain and other things, but it didn't mention twitching. I worry sometimes that we are eliminating all of these things, and that could bring us to ALS, or are there still many other things that can cause twitching??
I also felt better reading on here that widespread twitching is more likely to be benign, but then he said, with ALS, it can be variable, and basically present in any way. Not too reassuring! Also, he said that with ALS, the twitching tends to be in the thighs and shoulders, and I get it in my thighs alot. He did say at the end of the visit, though, that usually twitching assoicated with ALS is more of a persistent twitch than I have. Also, he did mention weakness, saying that usually presents also. BUT, I do have the knee problems (stiffness, pain) but don't know if that is related.
The point is, where does that leave us? It's kind of frustrating to sit back and worry about ALS, and not have any test you can take for it. I understand what he is saying, that the best thing to do is wait, because he dosen't want to put me through a painful EMG test, and his point was that it dosen't really matter as far as any treatments anyway.
Do you know what the time frame would be that I can start feeling somewhat comfortable that this might not be ALS? I was wondering if it dosen't progress too badly in say, a few months, is that reassuring?
I guess I'm having another nervous night myself! My twitching is not bad right now, but I am anxious about it. I did have it today, and it's easy to have these same old thoughts creeping in.
Thanks so much for all of your help on here! Val
All I know is that my panic is increasing, and with it my various twitches and tremors. I just can't remember when I have had them this bad. Unfortunately the more I read the more convinced that I am the unlucky statistic that not only thinks he has ALS, but actually does. I have read stories where hoarseness was the first symptom, eeek, it was losing my voice that caused me to discover my tongue tremor. I tend to discount the arm and leg symptoms as they are probably explainable by other things and don't quite fit with a bulbar onset, but can see no reason why you can't have more than one thing going on.
I have tried to bring my appointment forward, but it seems the neuro's secretary is on holiday? and so is the secretary who was supposed to write to that secretary so I guess nothing has happened.
All I do know is that the neuro's here seem to be very busy, perhaps there is a national epidemic of people like us.
Thanks for the post! I remember your other posts,and what you said about the brain tumor thing! That surely would have cause twitches in me, and probably much worse! It's funny how we can get all caught up in symptoms, though. I don't know if I mentioned this before, but it's about on the same level as my "bug in the shoe" story! I thought I had seen an area of muscle atrophy on my lower leg, near the ankle. It was this obvious indentation, it looked very different from the other leg. Anyway, when I first saw it, I was in a panic, and I think I had every symptom that night! I was almost crying. It just looked so strange to me. Anyway, that was a week or so ago, and I actually didn't mention it to the neuro because I just kind of forgot, we had been talking about so many other things, you know how hard it is when you are at the doctor's. I was trying to retain everything he said. Anyway, just tonight, I checked my leg, and it's gone! I don't know why, but it's just not there. So, I think there are advantages and many disadvantages to checking your body all the time. Now that I know what ALS twitching is supposed to look like, I keep driving myself crazy looking in the mirror for it. Did you see that video that someone posted on here, where it shows what someone with ALS looks like when they twitch? It is just what my neuro described, where the patient doesn't even feel the twitches, but all around the shoulder area, there were these little fine waves. It's like they are going all the time. I think I would pass out if I saw that! We actually watched that movie that I mentioned on another post called "Hanna and her sisters', and I don't love the movie so much, as the part with Woody Allen where he is a hypochondriac, it's just hilarious, and I can relate! My kids were cracking up, saying I sound just like that!
But, anyway, I was looking things up again tonight on 'google', and I shouldn't have done that, it got me in kind of a bad mood for a while. I thought I had read where widespread twitches were more indicitve of a benign process, but then I read tonight, I think it was on an ALS forum, where widespread twitches are indicitvie of ALS. I have read in several places that the opposite of that is true. I pretty much have them widespread, do you? I mean, I will get alot of them in the same area, but generally, I have them in my calves, thighs, arm area, sometimes in the face, such as the eye or lip, and in my hands, feet. They come and go quickly, but can pop up anywhere.
Yea, I was also wondering about Kidcoconut, he said he wanted to know how my neuro exam went, but he hasn't been around lately. Anyway, thanks for the post, talk to you soon! It sure helps to "talk" on here! Val
The waiting and the worrying is destroying my quality of life because I can't focus on anything else. You would think that having a known anxiety problem, they could prioritise me a bit, heck I can't even get to see a psychiatrist to help with the anxiety.
I have stopped googling for ALS, I know that is doing no good. It is also too easy to bring on a symptom out of anxiety, like my difficulty in swallowing that seems to have been just panic
I still can't decide which is the most worrying symptom, I do have weakness in my left toes, I am sure of that, I can move them every which way but they can't exert the same pressure as my right toes, ironically there is never any twitching in my toes. Thing is it was worrying about my left foot that got me to see the neuro back in 2004, but my legs came back clear on the nerve tests. I doubt if they will now. Well I have had backache and dull pains on the left side of my lower spine which I hope account for my toes, and I have met with sciatica sufferers who tell me it can affect your toes but without anyone qualified to tell me, how can I be sure and not think it is part of something worse
I suppose what we all want is to get an all clear that we definately do not have this thing.
I know how relieved I felt in 2004 to be told I did not have it and how much better I felt all round, but then perhaps they were being too hasty back then, and these days are more cautious in proclaiming you do not have something if there is never any definitive test that can rule it out.
It's easy to sense your anxiety in your posts, and I understand it completely! I have had so many times in my life, sitting at this computer, when I just felt panicked that I had something, that my symptoms were exactly as they were describing!
Try to stay off the ALS sites. That would be the most rare and unusual cause of your symptoms. I went on there, and it's so scary, because basically some of the symptoms mentioned on there are things that everybody gets every single day, it's just whether or not they worry about them.
My brother had similar symptoms to yours. He also had the trouble swallowing, and it never amounted to anything. I think he and I both suffer from anxiety, and of course hypochondria. I kind of hate using that word, because I think it's so much more than that. It's easy to label someone a "hypochondriac", when in reality, I think that it stems from so many other things. I think it goes all the way back to childhood, I can even remember stressing out about things back then. My brother had the twitches and tremors, and with the trouble swallowing, he was worried, but as with most people with these neurological symptoms, there was never a clear answer, and so he lives with the fact that he is anxious.
How long have you had the twitches? If it's been a while, you should be very reassured that if it were anything serious, it would be obvious by now. That is basically what my neurologist told me, that it's a "wait and see" kind of thing. That is hard for someone like me to hear, because of course, then, I'm having every symptom of ALS.
Just know that you are probably fine, and your symptoms are due to being anxious about them. As Kidcoconut once said on here, once something else comes up that he is worried about, then those other symptoms don't seem as obvious, and then the new thing is what takes over. I've had that happen alot too.
Still, it's hard for me to imagine that I could be making these twitches happen in my mind somehow. But, I asked my neurologist about it, and he did say that the mind is a very powerful thing, and you would be surprised what you can do. It's like my son told me, look at men who get pregnancy symptoms when their wives are expecting, that is totally psychological. Have you heard of that, where men get nausea, and even more symptoms during that time.
Anyway, I sure would feel alot better if some time had gone by since the start of my twitching, but for me, it's only been a few weeks. I wonder if this symptom will be with me for a while now, like my heart palpitations.
Try not to worry about the toe thing, that sounds like percieved weakness, something that you are paying too much attention to. Sort of like my 'muscle atrophy' story, in which I was panicked when I saw an indent on my leg, which has since disappeared. Go figure.
Good luck, and talk to you soon! Val
Why is it so obviously "anxiety" when I read your posts, but I can't see that in myself? My family tries to tell me that I am making myself sick, but I honestly cannot see it. Sometimes I think we are privy to way too many sources of information via internet. The fact is...there is excellent information available, but we aren't getting all the facts. What is more frustrating is to gain all this frightening info...then have to wait for weeks or months to see a specialist. I would recommend that you detox from the internet addiction, but then I would have to do the same. It's just too easy to give in to it. I do find this forum, however, to be therapeutic. I will continue to make contact if I learn anything from my doctors that might direct either of you toward answers and I hope you will do the same. Best wishes for happiness and good health!!
P.S. Val, my twitching has not been as intense lately, but it is definitely widespread. I am disturbed to hear that can be typical of ALS...I had read the opposite.
Thanks for the post! You know, I had read that in one place, about the widespread twitching, but in EVERY single other thing I read, it says that widespread twitching is more prone to being a benign disorder. Also, it might be taken out of context, because I think they might have meant widespread as to mean that it's a large muscle group. That is what that video looked like with this guy with ALS, it was like all these fasciculations happening in his upper shoulders, and just going on and on.
Are yours pretty random? It's strange how some days, it will seem like a particular set of muscles is being irritated. I know this is going to sound weird, but I want to ask you anyway. Today, right when I woke up, I had twitching in my upper leg, actually it felt like my butt muscle. This twitching kept up intermittently throughout the day. Not too much, but I mean I had it a few times. Then, when I was on the phone tonight, I had several "pops" going all up and down the left side of my body, and on my thigh at the same time. VERY irritating! I guess I wouldn't mind the twitching so much if it weren't for the fear of ALS. Otherwise, they are not painful or anything.
Tell me again, how long have you had the twitching? I feel like I will feel pretty good if after six months, I don't have any of the other important symptoms. I hate getting fixated on this stuff, it can be so depressing. I was reading some ALS stuff tonight on the internet, and I really have to stop! This board is therapeutic for me also, it's one of the only places that calms me down! Do you feel like you are an anxious person? I definitely am, but still have a hard time believing I could be causing these things, it definitely feels more like something is going on with my body. Especially since at 47, I've never had these before. I've had panic attacks, and all kinds of anxiety, and never had twitching before, so you think it would have come on sooner than this.
I worry myself so much, because I have a 13 year old daughter that I just want to be here for, and be healthy for her. We have our hands full with taking care of her, and I want the focus to be on her. She is going through her own set of challenges because she has scoliosis, and is wearing a back brace for a couple of years. She is so brave about it, and just a wonderful kid. I don't want to, and can't, worry so much about myself! I just need to be healthy. Which, I suppose, in irony, could be causing the twitches, just worrying about them anyway. It does seem like there are alot of people with the twitches, don't you think? I do worry about my knees and the problems I've been having with those, though, and hope it's not related. I don't think I have any real weakness, but my knees (especially my right one) are stiff and painful at times. I guess I have to TRY to hold on to the positives, such as my neuro exam being normal. The thing is, the doctor just wasn't that reassuring, but I don't think that had anything to do with me personally, I think it was his personality, he was a fatalistic type person.
Thanks again for "talking" to me on here, I hope you are doing well. I am going to go have some Sleepytime tea! Talk to you soon, Val
Oh my gosh,Val...this is too strange. I have a 21 year old daughter (love of my life) and she was also diagnosed with mild scoliosis at the age of 13. Since it was such a mild case, we were advised to keep a watch on it. She never experienced pain and we were told that it would stop progressing with her last growth spurt. At 21, she has a mind of her own and avoids seeing a dr. even though she does have back pain. I wish we would have been more aggressive at treating it when I was still in control. This is only one of the things I worry about on a daily basis. I really try to be strong and positive and I am for the most part (who am I kidding?) I worry about things I have no control over....my parents' death (they are perfectly healthy at 75), my daughter's future (she is a great girl, Sr. in college, and healthy for the most part), my own mortality (I've never really been sick), etc., etc., etc. It is no doubt that my body twitches. I am 52 years old and figure that certain things may just be happening in my body. My mother says she has experinced all these things, but never had time to stop and worry about them. My twitches actually began about six weeks ago. Prior to that I had experienced about six months of not feeling well (pressure in head and ears, blurred vision, neck stiffness, and overall weakness...not necessarily muscle weakness) With all this said, I still think our symptoms warrant concern. I will say again, however, that I think we are fearing ALS to the point of creating some of the symptoms. Our minds are powerful. (example: my daughter went for a routine blood test, and the nurse had trouble finding the vein. After watching this and squirming a bit, I left the room and went to the front desk to pay out. When the lady took my money, she noticed that the bend of my arm was red and splotchy as if I had been the one having blood drawn) This only proves that my mind is powerful (it has been described in other terms). I think you get my point, so let's continue to seek treatment for what is truly wrong with us and maybe some therapy for worrying about what isn't. You make me laugh so that is the beginning of my self therapy (especially the bug in the shoe story) Take care!
That is such a coincedence about the scoliosis! It's been such a stressful last few months, because I didn't know much about it at first, and of course, got online, and read all the scary stuff! She went to her regular doctor first, and took the X-rays there, and I was pretty happy when they said her curve was at 18 degress, because I had been reading about it, and anything under 20 is considered mild. However, when we did finally get to the Orhopedic Surgeon, he confirmed that she is actually at a 35 degree curve! Yikes~~I was so worried when I found that out that day, BUT....another one of my "hypochondriac" stories.....I had been looking up too many things online, and was very concerend that my daughter actually had a disease called Marfan's, because one of the symptoms is Scoliosis, and long limbs, fingers, thin build, etc. Kimberly does have that, where her fingers are very long and thin, and she has a lean, tall build. Anyway, I got so worked up about that, that when I was finally at the Orthopedic Surgeon's office, it was actually a relief, because he said she didn't have Marfan's. So, even though she was at 35 degrees, I felt relieved that day. Also, I have confidence that the brace is helping. She took an X-ray in her brace a couple months ago, and the brace is holding her at an 11 right now.
I have felt pretty good today, I actually was trying to be more physcial, and clean my yard, etc. It's weird, because I notice how I do feel better when I'm doing something, but then when I come in to rest, is when I feel the twitching starting. It seems like my nerves and muscles are just so 'irritated'. My brother gets the twitches also, and he said he had a bad one today in his chest that really got his attention. I tried some Sleepytime Tea last night, with Valerian in it, and that made me really sleepy. I do hear, though, how you have to be careful when taking herbs such as that, but it did seem to help. I get heart palpitations also, so I try to be careful what I take.
So, I'm sorry to be repeating myself, but these boards get so full, and it's easy to loose track of where our posts are. I just wanted to ask you sort of generally, where do you usually get the twitches? I think you said yours are widespread, but do you mean that they kind of pop up anywhere, or do they generally stay within a few certain areas. It feels kind of hard to explain with me sometimes. I mean, they are widespread as far as being all over my body, but I do feel like there are a few 'hot spots', where it occurs time after time, such as my left thigh particularly, my hands, my calves. Also, do you usually have them all day, meaning not too many hours of breaks from them? Sorry for all the questions~~
It is so reassuring to talk to you on here! I am just about your age, at 47, and I think it's that if I was younger, I would feel a little better that this was benign. It seems from all the posts on here, that a lot of younger people get them, such as my brother, who is now 40, but started getting them years ago.
I know what you mean about stressing about everything, I tend to worry so much about the future! I just want to be here for Kim, as I think I mentioned before. She just really needs me, because her brother and sister will be going to college and getting busier soon, and her Dad is working alot, so it's mostly me with her. She has some friends at school, but she's kind of a loner, just likes to read and hang out at home. I worry more for her than for myself. More than anything in the world, I wouldn't want her to go through the pain of seeing me so sick. Those kind of thoughts kind of get obsessive sometimes, and can make life now too stressful and unhappy. It's important to live for today, and I know that. Our family has such a great time when we are all together, and I just need to try to take it day by day right now. My extended family is living out in California (where I am from)...and so it's also hard to be living in an area where we don't have any family nearby. It makes situations like this much scarier.
Thanks again for listening, it's great to talk with you. I do agree that our symptoms warrant some investigating, but I do also think that there might come a time when we have to figure this out on our own, if nothing comes of it at the doctor's. That is basically what happened with my heart palpitations. The cardiologists can really only rule out serious stuff, and beyond that, you are kind of on your own as far as figuring out things that help it, and things that aggravate it. After years of having them, I have learned to live with them, and I know when I am doing something that might make them worse, and vise versa. I hope that is what happens with the twitches, that they are benign, and I just learn to live with them, and deal with it. I really will feel like the luckiest person on the earth if this isn't ALS. A scare like this really does make you appreciate the life that you have. I told myself that I would definitely start donating to some ALS organization, I just feel so much for those who are diagnosed with this.
Well, thanks again, and talk to you soon! Sorry about my long 'letter'! Val
I don't mind the questions, at all. I know what you mean about reading so many posts that you start to confuse what you've already read. My twitches can occur anywhere on my body, but usually I notice them only when I'm in a relaxed state. (not necessarily resting..sometimes riding in a car or sitting on the sofa, etc.) I also have what I refer to as "buzzing". It almost feels like tremors or vibrations and that is usually in my head, arms, legs, and especially my feet. I feel like my teeth could actually chatter at times. I have never one time felt pain, so I hate to complain so much. It is just a disturbing sensation that almost causes me to be nauseous. In addition to these symptoms, I still have the occassional tightness in my head, pressure in my ears, and numbness in my nose and lips. That's about all I can think of right now, but I'm sure if I read about any more diseases I'll acquire those symptoms before daylight:) I hope your daughter's condition continues to improve and I'm sure it will. Kids are more resilient than we give them credit, but I know this happened at a bad age for her. Just remind her what a beautiful, straight posture awaits her. With her long legs, she could be a supermodel one day. Take care Val and please keep us posted.
P.S. Just now, the muscle in the back of my left thigh started twitching.
Thanks so much for the answers! I hate it when I wake up, and right away I get one somewhere, and then I think, ok, it's gonna be a bad day with these things! I guess that could be very psychological!
My son Tivo'd an episode of 'House' he wanted me to see, have you ever seen that show? Well, it's this episode where they are on a plane, and this one guy gets violently ill, and they suspect it's bacterial menigitis, which is very contagious. The point is, when everyone on the plane knows this, they start getting they symptoms of it, even the rashes. People are vomiiting, sweating, having tremors, everything. It turns out this guy had something that was not contagious, and Dr. House explained 'Conversion theory', where, with the power of suggestion, your body can do anything. My son was saying how this is true, and how even if you don't want these symptoms, we could be making them happen because we are so afraid of them.
I know I keep asking you questions that I forgot the answer to, but you did see a neurologist, right? What did he actually say about the twitching? It's nice to hear other people's experiences with their doctor's because you can get so much other information. Like, with my neurologist, it wasn't even like he checked me that much, he just went on about what he does when anyone comes in with twitches. It's hard to remember exactly everything he said, but he said one thing about twitching being a disease of exclusion, I guess meaning that you just try things and exclude different diseases, at least those you can test for. One thing I was worried about, is that if we already tested my thyroid, which was normal, if my B12 is normal, and the sleep study dosen't show anything abnormal, then do you start assuming it could more likely be ALS, or are there still lots of other, more benign things? I worry that we are kind of starting to exclude the benign things. Is that what happened with you? You had an EMG, right? That would make you feel better, if that came out normal. I suppose even if everything came out normal, it could still be BFS, which there isn't any test for, right?
I guess I sound anxious today, I'm not sure why. I guess I am getting sick of waking up with twitches! I hate it when you wake up waiting for something, because then it is sure to come!
It sounds like your daughter is doing great! Back just a few years ago, there wasn't even much they did for scoliosis. Sometimes I wonder if we are doing the right thing with the back brace, but I think at a 35 degree curve, we are hoping to avoid any surgery. She does ballet four times a week, and at first, I was so worried she would have to give that up, but it's been the opposite. It's been great exercise for her. Thanks for the advice concerning her! Well, I hope you are having a great weekend, and sorry for my annoying questions! I hate the waiting game, the frustrating thing is that with these symptoms that we have, there is no one test that tells us what we have, so, for me, it's hard to sit back and do what he says, just to see if they get worse. Because, ultimately, as with the 'Conversion Theory', that is easy to make happen! Talk to you soon~~Val
Hi there...I don't remember what questions I've answered, so don't worry that you don't remember which ones you've asked:) The most disturbing thing about all this for me is that I have not seen a dr. since the twitches began. At the time I saw the neuro, my concern was "brain tumor". I had my grave half-dug because I had self diagnosed with every possible symptom. The MRI was negative and my clincical evaluation revealed that I had excess tension in my neck which was affecting my range of mobility and putting pressure on my cranial nerves. (This can affect every part of your body) Being fully opposed to prescription narcotics, I began to do neck stretches and other relaxation techniques....the symptoms were eventually better. THEN CAME THE TWITCHING!!! I've not gone to the dr. with this because I'm still exhausted from the brain tumor concerns that were unwarranted. As best I can tell, there is not a magical cure or relief for most of the twitching diseases I most fear. Maybe this is not the most intelligent approach, but I have decided to work on the anxiety factor and I seem to feel much better. My daughter was given the muscle relaxer (Flexaril) for a pain in her lower back (I'm hoping that's not the scoliosis) She could not take them because they make her so drowsy and she has a pretty full load at school. I cut them into fourths and I have taken 1/4 each night for the past week or so. My twitching has definitely tapered off. I still have it occasionally, but not with the same intensity. In addition, I am dealing with this wierd thing where I wake from a dead sleep with adrenaline type rushes. It is like that feeling of dropping off the highest hill of the roller coaster. I feel certain this is anxiety or worse case adrenal dysfunction. I gave into a saliva test that I got from my sister's naturopathic dr. It revealed low levels of T3 thyroid and low cortisol which can cause some of my symptoms. My problem now seems to be putting my faith into a dr. other than an M.D. Then I realize the M.D.'s haven't done much for me so far. Sorry for the novel, here....I get started and I can't shut up. Have a great weekend and feel free to ask me any questions. If I'm busy answering your questions, I'm not bothering everyone else with my paranoia ;( Kay
I went for an 8 and a half mile walk yesterday, and could not help focusing somewhat on my gait, posing impossible "chicken and egg" questions.
I have discovered that if my little toes on the left are weak, then my big toe is overdeveloped, certainly compared to the right big toe, but then, is the right big toe atrophied? Well you can see the circular thinking I go through.
What I reckon is that either my left big toe has compensated over time for the weakness in the little toes by adapting my gait to put the weight predominantly to one side, or my little toes have atrophied because I walk with a particular gait that does not roll over onto them as does my right foot.
It is effectively unanswerable as much as putting my wrist watch on my left and discovering the watch band is looser, never mind my being a right handed person who nevertheless through custom finds it easier to fasten the watchband on the right wrist with his left hand.
I suppose when it comes to it, all our musculature is somewhat uneven because of our personal habits when carrying things and using tools.
I suppose it is best to leave the real measurement to the experts and stop worrying.
Thanks so much for the reply! It was great to hear from you. I really do think that symptom that you are describing about the sensation of being on a roller coaster is stress related, because I've had something similar. I guess I do have a sleep disorder of some type, because I get alot of things like that, where I am either just falling asleep, or dead asleep, and something makes me jump and wake up. Sometimes it feels like a jerk, but other times it feels like something takes my breath. That is why the neurologist wants to do a sleep study on me, which I do next Friday. He said that if you are not sleeping right, that your brain signals get all messed up (although he described it in much better medical terms)....and that can cause the symptoms of twitching, etc. Although, I don't know why I wouldn't have had the twitching before this. I have had plenty of anxiety, and twitching was never part of my problem. It seems weird to me that it would start at my age.
I was wondering, have you had any eye twitching associated with this? My eye has been twitching on and off, not too much, but tonight it has been twitching more. At first, I guess over a week or so ago, I was actually happy that it was twitching, because I heard that ALS does not affect the eye muscles, but then I read where you can still twitch on your eye, that it's the muscles that move your eye that are not affected by ALS. That is the way I took it anyway, but I'm not sure, it was written kind of weird. It just seems like I wouldn't be twitching in my eye if it were ALS, I don't know why, I guess because I'm not having any difficulty swallowing, chewing or talking. And, the reason that made me feel better, is I was thinking that if my eye was twitching, that might mean that it would more likely be some anxiety issue.
There are so many weird symptoms that pop up when you are hyper-aware of yourself, especially neurologically, I think. Tonight, I was shopping, and it was the weirdest feeling, it was like kind of a numb feeling in the back of my throat, kind of like the back part of my tongue. It was a sensation that came on just for a second or so, and would return every so often, but it got my attention, and made me nervous. I hate that I'm going through this, it's horrible to be aware of your every symptom, and just waiting for your body to get worse.
You had the MRI, though, which would rule out anything too serious, so that is great. I kind of wish my neuro had ordered some tests, because then I would have some peace of mind, anyway. That is, if they came out o.k.
I have also been twitching in other areas tonight, especially my calves, hands, here and there. You did say that you get the twitching everywhere, right? I'm so sorry, but is forgetfulness a sign of ALS?? Just kidding~~
Anyway, thanks for the talks, it is very comforting to talk with you about this. I don't know why this twitching gets the best of people, I guess it's just nervewracking, especially the connection to ALS. Although, I felt better tonight when I read a response from a neuro to someone who posted a question about twitching and ALS, and he flat out said that twitching without muscle weakness or atrophy is not ALS. Although, again, I do have the knee issue that makes it tough to walk sometimes, but that is not as much weakness as it is pain.
And, I guess one could have some atrophy and not know it. Yikes~~gotta think positive!! Thanks again, and talk to you soon!! Val
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