Jax7722
New Member
Join a Facebook group BFS recovery you’ll find all the help and answers you need there. My name is Jason. I’m doing fine. stop by and introduce yourself.
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Benign Fasciculation Syndrome and TMS
- Thread starter Joe Boast
- Start date
Hi, I just saw this forum. My twitches started about 4 years ago, I also googled and red about that horrible disease that Angela is talking about. My life hasn’t been the same ever since. When it first started I also went to every test imaginable. Nothing convinced me that I was ok! I guess google had the it’s damage already. I’m any case I started taking Lexapro, for a while the twitches were gone. But they returned a year and a half ago with the vengeance. Again same fear woke up I have been doing all the tests including emg and nerve condition. All tests are ok. But I have twitches every day and sometimes all day none stop just like right know as am writing. Every time I twitch I’m scared just like I was the first day.
Hi Amenda,
Your story hit home for me. I am also in the same situation as you. First thing I did was read about that and my life hasn’t been the same ever since. I noticed last time you were on here was 2 years ago
How are you doing now?
AngelaFlorida
New Member
Hi. Well it will be three years for me this November. I don’t twitch like I used to but I do still have twitches. I think mine started after the illness I had and it damaged the nerve root. I healed from most of the issues I had I do still have days where my facial numbness comes back but it was there for almost a year and five months without abating. One day it just started to go but it always comes back. I saw all the specialists and had over ten emgs and there was nothing. Not since the first emg I had in the beginning while I was very ill that showed the guillan Barre Syndrome. I saw a neurologist who told me he believed that I had a moderate case and that I will continue to improve in years. Or maybe I will be the best it’s going to get at 3 yrs. I am not as afraid as I was two years ago. Sometimes I will get a few twitches and my mind will say hey what’s happening but then I remind myself that I have come a long way and I may have to live like this the rest of my life. I met someone on this forum that really helped me he told me about the Facebook group and I joined it but he helped me the most we are friends and I can message him anytime I get concerned but it is less frequently now. We try to talk about our lives more and not this stuff.
I will tell you once you get your anxiety under control the symptoms may improve. I went to Mayo, Shands, and USF. Saw the top specialist in this field and other then they agree a autoimmune illness caused my symptoms they have no answer what to do. Exercise may help too. I exercise three times a week now when I was recovering that first and second year I exercised everyday like a obsession. Kept thinking it was going to prove that I didn’t have to worry. Nothing helped me. I took tons of supplements and read tons of information. There is nothing that will fix it but time. Time is what keeps me from being so scared. I also had a neuromuscular neurologist tell me that there is nothing I could do if I did have als because there is no cure. I needed to go live my life. I realized that there is no guarantee and I was making myself crazy. They assured me I didn’t have als and I should seek counseling after my ordeal. The scary part for me was there is no test to diagnose als so they don’t know if you will get it. I read so much my mind was playing tricks on me. There is no test no thing that you can do to prove you won’t have it. Time is the only thing. I was told at Mayo that the emg rules it out but I had read studies that contradicted that so I wouldn’t believe them. I kept having more emgs. All were normal. I knew I had to do something so I just told myself to get over it and start living again. So I did. I will tell you if you take medication for anxiety and talk to a therapist just for awhile it may help. I also realized I couldn’t talk about forever it made my anxiety worse. I had to have distractions. So stay busy. I went back to work started hobbies and started doing more active things. Cycling hiking traveling. Anything until bedtime. I also took a medication called amitriptyline. One of my neurologist put me on it and I feel it saved my life. I use it in a low dose it relaxes me and helps me sleep well. I have stayed on the low dose for over two years now. No issues but that is me you would have to find out from a doctor if it is okay for you. I tried everything medically and in the end time and moving on has helped me.
I agree mostly that I had the illness my neurologist said I had but it took nine months to get that diagnosis. It was in the third month I was freaked out because the doctors wouldn’t agree or even know what I had.
My neuromuscular neurologist told me not to be afraid and not to come back unless I developed progressive weakness that made me unable to function normal and I said okay. He said no other symptoms matter. He had a guy covered in twitches which are really called fasciculations. He could seem them everywhere on this guy and he didn’t have the disease. So while they can’t explain it, it can happen. He gave me a website called neurosymptoms.com I think it could be .org but try it and it describes other reasons for the symptoms. I hope this helps anyone who may read it. I can tell you I am mostly recovered but I still have a tiny little nag every once in a while. It’s like PTSD. I am just thankful that I am where I am now. Wishing you the best.
Hey everyone, just found this forum and definitely wanted to post. Thankfully some of you are currently active.
I've had BFS since November 2015. Over a few weeks, it went from zero to 100. I was getting constant daily twitching in my temples, and just above my ears (directly where my glasses would rest). It was worrisome at first, but once it didn't go away, I definitely started panicking.
I didn't have a family doctor yet (just moved to a new city) so I went to a walk in and got a referral to a neurologist. I described the worst of my symptoms as prolonged periods of constant muscle twitching in specific muscle fibers, temples and above ears. Easily 10-16 hours at a time, like morse code in the side of my head, no way of turning it off. This would happen 3-5 times per week, effectively ruining most of my days with this ridiculously invasive and torturous twitching.
This neurologist wouldn't listen to me, and kept insisting I had Tourettes Syndrome. It's possible I have some very mild form of it, I have a few minor facial tics, it was worst when I was very young but I eventually stopped. Now, I tend to raise my eyebrows a lot, and it comes from wearing glasses and constantly pushing them up my nose. Anyway I digress.
I never went back to that neurologist again, he clearly didn't care about my well-being. Just grinding through his day to get to the next patient and go home. So my mom suggested I look into Botox as a solution. I had my new family doctor arrange a consult. If you're unaware, Botox is generally used for cosmetic reasons, and temporarily paralyzes muscles that it is injected into, for a few months at a time.
Going on 9 months, I was in an extremely dark place. Definitely contemplated suicide quite a bit. This was the absolute worst physical torture I'd ever experienced. There were days at work and evenings and sleepless nights where I wanted relief badly enough that even if it meant death, I wanted it. This was serious. I finally got an appointment and got a series of Botox injections directly into the problematic muscle fibers. What followed was my first 4 days straight without twitching in 9 months. I was in disbelief that it actually worked. It came back on day 5 or so, but I went back and got more injections, and that killed it for a solid 5 months.
Now you may be thinking, success! A solution was found! Well, yes and no. For one thing, Botox is incredibly expensive. $450CAD per round of injections. So close to a grand a year. Despite this, I was very willing to pay that price for long-ish term relief. And I can honestly say that botox saved my life. Without it, I don't think I could've held on much longer. However, I soon found that my brain, muscles, body, whatever it is, something simply had to twitch. When my temples couldn't twitch anymore, my calves and eyelids started. Fastforward to now, and there's been no further change. I've continued to go back for botox rounds since, and it has gradually lasted longer and longer. I'll try to wait until 9 months have passed before I go for my next round.
I should also mention that over the past few years, I've had many tests done and while BFS isn't exactly something you can definitively diagnose, we're all pretty certain that's what this is.
But the twitches still happen everywhere else. Literally, from the top of my head to the bottom of my foot, it has twitched before. But it still happens most severely in my calves and eyelids. Despite the amazing relief that Botox has provided, I'm basically back to where I was. My calves twitch so much that it affects my daily life. I have to sleep in weird positions, sit in weird positions, often go without sleep, and I'm worried that soon, I'll slip back into that dark place where I see no hope and want nothing more than permanent relief.
Anyway, thanks for reading my rant. Not sure what I expect from replies, but it is nice to say it all.
I've had BFS since November 2015. Over a few weeks, it went from zero to 100. I was getting constant daily twitching in my temples, and just above my ears (directly where my glasses would rest). It was worrisome at first, but once it didn't go away, I definitely started panicking.
I didn't have a family doctor yet (just moved to a new city) so I went to a walk in and got a referral to a neurologist. I described the worst of my symptoms as prolonged periods of constant muscle twitching in specific muscle fibers, temples and above ears. Easily 10-16 hours at a time, like morse code in the side of my head, no way of turning it off. This would happen 3-5 times per week, effectively ruining most of my days with this ridiculously invasive and torturous twitching.
This neurologist wouldn't listen to me, and kept insisting I had Tourettes Syndrome. It's possible I have some very mild form of it, I have a few minor facial tics, it was worst when I was very young but I eventually stopped. Now, I tend to raise my eyebrows a lot, and it comes from wearing glasses and constantly pushing them up my nose. Anyway I digress.
I never went back to that neurologist again, he clearly didn't care about my well-being. Just grinding through his day to get to the next patient and go home. So my mom suggested I look into Botox as a solution. I had my new family doctor arrange a consult. If you're unaware, Botox is generally used for cosmetic reasons, and temporarily paralyzes muscles that it is injected into, for a few months at a time.
Going on 9 months, I was in an extremely dark place. Definitely contemplated suicide quite a bit. This was the absolute worst physical torture I'd ever experienced. There were days at work and evenings and sleepless nights where I wanted relief badly enough that even if it meant death, I wanted it. This was serious. I finally got an appointment and got a series of Botox injections directly into the problematic muscle fibers. What followed was my first 4 days straight without twitching in 9 months. I was in disbelief that it actually worked. It came back on day 5 or so, but I went back and got more injections, and that killed it for a solid 5 months.
Now you may be thinking, success! A solution was found! Well, yes and no. For one thing, Botox is incredibly expensive. $450CAD per round of injections. So close to a grand a year. Despite this, I was very willing to pay that price for long-ish term relief. And I can honestly say that botox saved my life. Without it, I don't think I could've held on much longer. However, I soon found that my brain, muscles, body, whatever it is, something simply had to twitch. When my temples couldn't twitch anymore, my calves and eyelids started. Fastforward to now, and there's been no further change. I've continued to go back for botox rounds since, and it has gradually lasted longer and longer. I'll try to wait until 9 months have passed before I go for my next round.
I should also mention that over the past few years, I've had many tests done and while BFS isn't exactly something you can definitively diagnose, we're all pretty certain that's what this is.
But the twitches still happen everywhere else. Literally, from the top of my head to the bottom of my foot, it has twitched before. But it still happens most severely in my calves and eyelids. Despite the amazing relief that Botox has provided, I'm basically back to where I was. My calves twitch so much that it affects my daily life. I have to sleep in weird positions, sit in weird positions, often go without sleep, and I'm worried that soon, I'll slip back into that dark place where I see no hope and want nothing more than permanent relief.
Anyway, thanks for reading my rant. Not sure what I expect from replies, but it is nice to say it all.
cubbies3382
Newcomer
Hello I’m new here as well I started twitching about 4 weeks ago and really freaked me out. I’m high stress and high anxiety to begin with because I had cancer in the past but everywhere I read says that I have ALS I’m twitching in my arms legs feet shoulders even my upper lip I went to my doc immediately he referred me to a neurologist who did an EMG on me on my left side of my body and it came back normal. Would that rule out ALS??
1. Did I get the test too soon because I was tested 2 weeks after symptoms and they haven’t gone away.
2. Could it be on my right side and they did the wrong side?
3. Should I get another EMG or is 1 enough?
1. Did I get the test too soon because I was tested 2 weeks after symptoms and they haven’t gone away.
2. Could it be on my right side and they did the wrong side?
3. Should I get another EMG or is 1 enough?
AngelaFlorida
New Member
Hi. I am sorry you are going through this. I was in your spot few years ago. Please go on the BFS recovery Facebook to get more help from many people. I can tell you that I am a lot better because y symptoms diminished tremendously at almost three years now. Yes a emg on one side does show that you don’t have it. I would say wait three or four months and get a repeat just for yourself to help you feel more confident. Please get a emg by a centers of excellence. Like mayo or Johns Hopkins etc. have it performed by a neuromuscular neurologist.
Anyway. You are not alone. Go on Facebook and join the group thousands of people are on there and will help you.
AngelaFlorida
New Member
Plus to answer your questions. One side is good enough because even if it was on the other side it would show up because it follows the same tracts in the nerves. So if it was there the emg would show it. Plus the emg just proves at that time it wasn’t present. You really don’t need another emg unless you just want one. I have had many and it didn’t help me get over the fear. It was time that helped me. The best advice I received was it isn’t the twitches as much as the company they keep. Like I twitch but that is all no weakness no problems doing what I normally do like drive a car unlock my door. Real weakness is not being able to unlock you door turn your keys push on your gas pedal button your shirt etc. the average everyday things you do but suddenly can no longer do.
Patrisia
Peer Supporter
I just want to note that even if EMG tests positive for nerve damage it is not alwats accurate. Plus everything in body heals so there is no such thing as nerve damage that doesn't heal. If are talking about nerve damage caused by diabetes then that's a different thing, the diabetes needs to be treated for the nerve damage to go away..
cubbies3382
Newcomer
Thank You for the responses. I started twitching a little on my tongue I keep examining it and holding it out and on the left side it twitches a little. The twitching is everywhere now I’m worried because my EMG wasn’t done for my tongue or throat just limbs. Should I be concerned? I’m in Chicago tried to go to Mayo but they wouldn’t see me my doc is good and he referred me to a Dr Minieka he’s affiliated with Northwestern and he did the EMG my doc told me he used to head up an ALS clinic so my doc says he knows the disease well. Should I be concerned with my tongue or is it just anxiety? He told me ALS twitching is not something they look for they say it’s Weakness because by the time it twitches the muscle is gone. Thanks again for responding.
cubbies3382
Newcomer
So the doctor who did my EMG I guess my primary says that’s all he does all day long if someone needs an EMG they refer them to him.
jimmylaw9
Peer Supporter
Yip defo TMS in the feet. I have had a lot of anxiety symptoms and the feet tingling is prob the last to go but I also had leg inner tremors. Still have and it’s just stupid nervous thinking I need to stop. Because when I’m busy I don’t notice it as much
Progressguy
Newcomer
First and foremost, hello everyone on this post. I have taken the time to read through everyone's story and can empathize with many of you pertaining to the physical symptoms and emotional stress/agony each of you have tied into the unknown or the potential of having a deadly disease. I truly apologize ahead of time for the long posting, but it is important to me to tell my story and hope that someone can help understand and/or give peace of mind. There are a lot of details because my story is complex, so I do thank anyone who reads through this for their patience.
As an introduction, I would like to start out by saying I am in my early 40's and have a family, great career (albeit stressful and demanding), and hobbies that I enjoy doing. I have been physically active most of my life including weightlifting and walking/jogging. But I have also been an overly anxious person most of my life, and have been through medical scares at a young age which seemed to have heighten my anxiety anytime I see a doctor or begin feeling symptoms of an illness. Anxiety visiting the doctor office usually results in a high blood pressure reading even though I do not have clinical hypertension. I also tend to be a germaphobe especially in cold/flu season. I won't touch public or work door handles with my hands, but instead use my sleeve. If I touch anything in public or at work I use alcohol hand sanitizer. If we go to a restaurant to eat, I wipe down the menu and table with sanitary wipes, and am the same way at work. I won't touch refrigerator doors, microwave handles, or even the water dispensing machine without either using a paper towel, or, washing my hands thoroughly afterwards. Yes, I know. I have "it" bad.
Anxiety triggers; the beginning:
About 22 years ago I had a general practitioner tell me I have full blown AIDS when I was 20 because I came into his office with thrush in my mouth, a sinus infection, and bronchitis. I also dropped 5lbs of weight in 2 weeks. He dismissed the fact that I was on antibiotics and I abused a corticosteroid called Rhinocort for nasal allergies, and insisted I begin prophylactic medication immediately. Very terrifying and traumatizing, but thankfully that doctor was wrong about HIV/AIDS. Several years later, I was also in a bad motor vehicle accident that affected me physically and emotionally, but thankfully the physical scars and bones have all healed. I now have increased paranoia and anxiety ANYTIME I am a passenger in a vehicle. I have also suffered from panic attacks with physical symptoms on and off for years.
So these two examples and the medical testing and symptoms that surrounded them triggered something in me, that anytime something is physically wrong, I freak out. And that goes for taking medicine/antibiotics as well (another story).
The beginning of recognizing alcohol is not a crutch:
Now for the most recent situation I am in, that I really need some advice/insight into. For the last two- three years, I admittedly have been drinking alcohol heavier than I should be. In the last year it is happy hours after work drinking 5-6 craft beers several times a week, and nights I don't go out I have beer at the house while cooking or hanging out. Weekends I would sometimes go out and put down 6-10 craft beers a night and repeat the following week. I have been drinking alcohol moderately to heavy (beer mostly) for years but always had good blood work including liver, kidney, and blood sugar. Well in the spring of this year, I noticed I started getting frequent diarrhea and nausea from time to time almost like I had food poisoning, in addition to poor sleep (waking up to an internal tremor, panic attack feelings, rapid heart rate, etc) To combat the gastrointestinal issues I began taking Pepto Bismol on and off maybe once or twice a week around March/April of 2019 to deal with the symptoms. The internal vibration/tremor freaked me out but would go away when I shifted around in bed or would get out of bed. I also had instances of sleep walking where I would "see" what I was doing, remember what was I was doing, but couldn't get out of the trance I was in.
Neuro-symptoms, and vacation, and beer, and Pepto, and the onset(s): (attempted humor)
In April, my son came down with the flu, burning up fever, and I was scared to death for him -AND- me. I in turn had to leave the house for that week due to business travel and requirements, so I would go out in the evenings, have dinner and drink beer. I would also suck down copious amounts of Airborne to hope from getting sick. During this time, I would lay down in bed at night, and started noticing a twitching feeling on the right side of my body. First the right side of my mouth, then it would immediately hit my right shoulder, then right buttock, and then right calf/foot. It was almost like a rhythmic twitching feeling that kept me awake for several hours. The next day I essentially felt nothing until it was time to go back to bed again. Same thing happened for the next 4-5 nights, when it magically went away after I went back home and knew my son was ok. I chalked it up to either stress, too much of a vitamin in the Airborne, or who knows what?
In mid August my family and I were preparing to go on vacation. At this time I was still drinking heavily and taking Pepto Bismol on a more regular basis to combat diarrhea and sometimes nausea. But I was also working out regularly; doing walk/sprints 3-4x a week and lifting free weights in my basement gym 3-4x a week, and felt good. Sprinting was getting easier and the weights were getting lighter. But I did noticed my right pectoral muscle would spasm, as in a full on flex, and then release for several days after a hard chest work out. Again, thought nothing of it.
The day of vacation, I sucked down some Pepto as a precaution in the event I would get sick mid-ride from the drinking the night before. I noticed my right eye began twitching heavily during the drive almost affecting my vision. Upon arriving at the beach we checked in and I went my own way to grab some beers at the bar down the boardwalk. Met a friend and had 5-6 drinks. Came back to the hotel room and engaged in something else that I am not proud of; took a few hits of marijuana that I got from a friend. Yes, I was attempting to self medicate my anxiety and be "laid back".
Later that evening I went out to see a band play, and nearly got into an accident because a few guys in a large truck ran a red light. I yelled, got upset at the guys, and subsequently shattered my wife's SUV's front windshield with my fist. After this, it took me quite a while, but I calmed down but still felt upset. I ended up going into the club to hear a band play, had another 6-8 beers over 2-3 hours, and called my wife to pick me up since I was drinking heavily. I won't go into the windshield aftermath, but it wasn't pretty. However, when getting back to the hotel room, I drank more Pepto because my stomach was sick and then puffed on another magic pipe. This type of binge/heavy drinking/behavior/smoking/Pepto continued the entire 6 days until we came home. Again, I am not proud of this behavior nor do I condone it. I was simply out of control and I know that now.
Since being home I have been experiencing many of the same symptoms posted on this board for the past 7 weeks. I constantly go back through my head attempting to find reason or logical solutions to the symptoms I am experiencing, such as too much Bismuth (heavy metal), something in the weed, alcoholic neuropathy, anxiety...what?
At home:
Symptoms as mentioned really started in my left eye on the day of vacation. As I was laying in bed some evenings on vacation I noticed both of my lower legs felt "nervous" or "restless". Couldn't put my finger on it, but the feeling eventually went away. After waking up the next day at home I started getting a frequent twitch in my left elbow area and also my right calf muscle. As this began to concern me, over the course of the next week the twitching spread everywhere, especially bad in my calf muscles, right calf being the worse. Every since the twitching is in my calves, thighs, lower back, upper back, stomach, buttocks, sides and tops of hands, forearms, back of shoulders, back of neck, front of neck, lower lip, right eye, left side of my scalp around my temple, and the list goes on. The twitching I could only feel when at rest or lying down, but when moving, I couldn't tell it was there. I also started feeling tightness in my calves when I walked and the twitching would get worse after I used my muscles. The tightness went away eventually with "walking it off", massage, or stretching, but still did not feel right. And I hated the idea that I seemed to have exercise intolerance by getting tight calf muscles and sometimes thighs.
My right arm near the elbow would also get stiff from minor use and then I would feel like my right thumb and index finger would be tight and not want to cooperate well with me. Around this time I also noticed tinnitus, or ringing sounds in my ears, but ALSO a sort of humming noise in my right year that comes and goes. So long story short, I am freaked out ALL the time and constantly dreading going to bed because I know what it means. Twitching, vibration feelings in both lower legs, and twitching in other locations. I did notice the twitching also seemed to get worse if I got angry or upset at something. But use definitely triggers the twitching.
Doctors:
I first visited my general practitioner for my symptoms about 2 weeks after onset. Doctor did the usual strength, reflexes, and coordination tests and agreed that everything seemed fine. Although my knee reflexes seemed high to me because when he nailed my knee, it would fly upwards and then back and hit the table. He thought nothing of this. He then did quite a bit of blood work including antinuclear antibodies, erythrocyte RBC test, CBC, magnesium, vitamin D, calcium, and full metabolic panel. The only items that came out off were slightly raised RB erythrocytes (19) and my vitamin D was as low on the normal scale as you can get. Doctor told me no more Pepto or alcohol and to give this a few weeks to clear up. Plenty of water and rest and try to exercise. I essentially followed none of this advice except water. Drank beer several days a week, would drink shots of scotch to put me to sleep at night, and didn't exercise except walk around my house 2-3 miles a day, per my pedometer.
Next doctor visit was a week later because I was getting nerve pain in my right calf and numbness in my left big toe. It felt asleep all the time. This GP checked me out and found all looked, even with the supposed hyperreflexia that may be present in my legs. I cannot recall if my legs reacted the same this time as last, but she thought all seemed ok and I was worrying way too much about my claim of having ALS symptoms. I nearly broke down and cried ( yes a 4o some year old man who is three times her size ) when I told her this entire situation is negatively affecting the quality of my life due to the anxiety and worry.
A week later it was a local neurologist. He asked my background, I gave him the same boring story I am telling everyone here about the Bismuth, weed, yada yada. So he did a physical exam, performed a sort of hammer test on my muscles to see if he could get them to twitch, and some of them responded with twitching. He said my strength was impeccable or at least seemed to when I made the bones in his fingers crack when I squeezed. But he did call out the hyperreflexia of both legs, but stated that it could very well be from be being overly anxious. And yes, I was overly anxious with a BP of 155/95 and cold clammy hands and feet. That's my mojo it seems. So he said, I do not think you have ALS, but I want to get an EMG as soon as possible. How about now? Well the lady who conducts the tests was off work, so he scheduled me for 3 days later. He also did more blood work (I had to ask him for Vitamin B and Lymes disease) that apparently came back "ok." I never did get the results.
After my visit with the neuro I was very shaken up. To the point where I was in panic all the time. I came down with bronchitis and a sinus infection that I treated at home and subsequently came down with laryngitis. About a week later my voice began to come back, but has never been normal in the 5 weeks since I got sick. Sort of raspy and will give out a little if I talk too long in meetings for work. I do however have bad post nasal drip and wake up with a lot of phlegm in my throat, fall allergies, a little continued chest congestion/cough, and I believe dealing with sleep apnea. I will say that I am looking to anything other than ALS for the voice changes.
I also began to have sleep disturbance where I would wake up and feel a vibration/tremor feeling somewhere in my jaw/tongue and sometimes legs. I could get this to go away by relaxing and reading an article on my phone after about 10 minutes. Unfortunately this lead to 3-4 hours of sleep per night in an exhausting rollercoaster of misery and self loathing. The vibrating/tremor of my jaw would and still does scare the heck out of me in the middle of the night (only time I get this) and the twitching just kept bringing back ALS thoughts...always. I would also begin using whiskey at night to get drunk to put me to sleep, or beer...(no marijuana) . I also noticed that alcohol would calm my twitching down anytime, so I was drinking regularly again, but perhaps it made things worse the next day with the twitching.
Even when driving my car for periods of time, it would make my right left twitch all over but resolve after a few minutes of stretching or maybe getting my mind off it.
Current
It has been 4 weeks since the EMG appointment and 7 since this started, and I have another appointment with a neurologist Monday of next week. I can say that I am frightened to death to take this further,..but here is what is giving me hope this may not be NOT ALS:
1) This forum and reading on BFS.
2) I have been doing pushups for the last week on nearly a daily basis. I can usually muster about 70 throughout several sets. I also pushed up 210lbs of flat bench the other night several times fairly easily. Keep in mind, for the last 7-8 weeks I barely got out of the chair other than to use the bathroom, get something to drink, or anxiously pace around my house in fear and obsessing. I have been working from home and isolated mostly because of fear and anxiety.
3) I have been doing body weight squats in 3 sets of 12 several times a week and am walking a few miles per day. The squats at first made my legs feel tight, kind of weak, and like jello. But I guess I'm not used to lower body exercises like this since I haven't done them in years...other than run. I also was able to do single leg extensions with 100lbs 5-8 times without much trouble.
Sometimes like today I jogged for a 1/2 mile and walked the rest, then came home did 3 sets of body weight squats, went to the basement and did 3 sets of 10 on bench press with light weights (150lbs), and then washed my car. Although my legs felt very stiff and shaky while washing my car from the up/down of cleaning and drying, I keep reminding myself that I have been a couch potato for nearly 2 months and am just getting back into this. So, validation (excuse) for legs feeling off.
4) The twitching is very random on my body and moves around a lot although more present in legs. However, the twitching overall has improved the last 2 weeks. If I had to quantify it, I would say 40% improvement. It is less frequent and at times less severe. I also no longer feel the vibration feeling in my legs at night and my legs rarely keep me awake.
5) Doctor prescribed me a low dose of benzodiazepine to help me sleep. The benzos actually seem to help the twitching and anxiety also....somewhat, although they are the lowest dose you can possibly get. I also stopped drinking any alcohol for the last week since I want to clean my body -and- act up.
So that is my story and where I am. Scared to death, was beginning to think about the end of my life constantly, obsessing over it, driving my poor wife and mother insane by the constantly questions, panic, and talking about ALS. Lately, things have been slightly better with the benzos, increased exercise (that gives me hope that I am not very weak), and reading this board and everyone's stories. I can say that my body just doesn't feel "right" during exercise especially my legs, but I again I am keeping hope that this is benign in nature, or almost ANYTHING other than ALS. Its times like this where I start to feel upbeat and positive, but I know one new or reoccurring symptom will beat me back down into the ground again where I cannot find hope.
I pray for healing and the opportunity to start my life over again and correct the things I know I was doing wrong; to be a better man, be a better example for my son, and live my life for Christ like I should have been for many years. Yes I am a Christian (if you don't believe in Christ, that is ok, that is your prerogative, but please do not bash me for telling my true beliefs) but I make many mistakes.
Next step, speak with another neurologist and will have to bite the bullet for an EMG regardless of my paralyzing fears and anxiety on the outcome. My mind goes from having hope that this is NOT ALS, to full blown, I'm 90% certain I am a dead man walking and where I am making plans to sell off assets and arrange my insurance providers.
Thanks for all who took the time to read, and hopefully someone can also empathize with this situation and help to also give me a peace of mind..
As an introduction, I would like to start out by saying I am in my early 40's and have a family, great career (albeit stressful and demanding), and hobbies that I enjoy doing. I have been physically active most of my life including weightlifting and walking/jogging. But I have also been an overly anxious person most of my life, and have been through medical scares at a young age which seemed to have heighten my anxiety anytime I see a doctor or begin feeling symptoms of an illness. Anxiety visiting the doctor office usually results in a high blood pressure reading even though I do not have clinical hypertension. I also tend to be a germaphobe especially in cold/flu season. I won't touch public or work door handles with my hands, but instead use my sleeve. If I touch anything in public or at work I use alcohol hand sanitizer. If we go to a restaurant to eat, I wipe down the menu and table with sanitary wipes, and am the same way at work. I won't touch refrigerator doors, microwave handles, or even the water dispensing machine without either using a paper towel, or, washing my hands thoroughly afterwards. Yes, I know. I have "it" bad.
Anxiety triggers; the beginning:
About 22 years ago I had a general practitioner tell me I have full blown AIDS when I was 20 because I came into his office with thrush in my mouth, a sinus infection, and bronchitis. I also dropped 5lbs of weight in 2 weeks. He dismissed the fact that I was on antibiotics and I abused a corticosteroid called Rhinocort for nasal allergies, and insisted I begin prophylactic medication immediately. Very terrifying and traumatizing, but thankfully that doctor was wrong about HIV/AIDS. Several years later, I was also in a bad motor vehicle accident that affected me physically and emotionally, but thankfully the physical scars and bones have all healed. I now have increased paranoia and anxiety ANYTIME I am a passenger in a vehicle. I have also suffered from panic attacks with physical symptoms on and off for years.
So these two examples and the medical testing and symptoms that surrounded them triggered something in me, that anytime something is physically wrong, I freak out. And that goes for taking medicine/antibiotics as well (another story).
The beginning of recognizing alcohol is not a crutch:
Now for the most recent situation I am in, that I really need some advice/insight into. For the last two- three years, I admittedly have been drinking alcohol heavier than I should be. In the last year it is happy hours after work drinking 5-6 craft beers several times a week, and nights I don't go out I have beer at the house while cooking or hanging out. Weekends I would sometimes go out and put down 6-10 craft beers a night and repeat the following week. I have been drinking alcohol moderately to heavy (beer mostly) for years but always had good blood work including liver, kidney, and blood sugar. Well in the spring of this year, I noticed I started getting frequent diarrhea and nausea from time to time almost like I had food poisoning, in addition to poor sleep (waking up to an internal tremor, panic attack feelings, rapid heart rate, etc) To combat the gastrointestinal issues I began taking Pepto Bismol on and off maybe once or twice a week around March/April of 2019 to deal with the symptoms. The internal vibration/tremor freaked me out but would go away when I shifted around in bed or would get out of bed. I also had instances of sleep walking where I would "see" what I was doing, remember what was I was doing, but couldn't get out of the trance I was in.
Neuro-symptoms, and vacation, and beer, and Pepto, and the onset(s): (attempted humor)
In April, my son came down with the flu, burning up fever, and I was scared to death for him -AND- me. I in turn had to leave the house for that week due to business travel and requirements, so I would go out in the evenings, have dinner and drink beer. I would also suck down copious amounts of Airborne to hope from getting sick. During this time, I would lay down in bed at night, and started noticing a twitching feeling on the right side of my body. First the right side of my mouth, then it would immediately hit my right shoulder, then right buttock, and then right calf/foot. It was almost like a rhythmic twitching feeling that kept me awake for several hours. The next day I essentially felt nothing until it was time to go back to bed again. Same thing happened for the next 4-5 nights, when it magically went away after I went back home and knew my son was ok. I chalked it up to either stress, too much of a vitamin in the Airborne, or who knows what?
In mid August my family and I were preparing to go on vacation. At this time I was still drinking heavily and taking Pepto Bismol on a more regular basis to combat diarrhea and sometimes nausea. But I was also working out regularly; doing walk/sprints 3-4x a week and lifting free weights in my basement gym 3-4x a week, and felt good. Sprinting was getting easier and the weights were getting lighter. But I did noticed my right pectoral muscle would spasm, as in a full on flex, and then release for several days after a hard chest work out. Again, thought nothing of it.
The day of vacation, I sucked down some Pepto as a precaution in the event I would get sick mid-ride from the drinking the night before. I noticed my right eye began twitching heavily during the drive almost affecting my vision. Upon arriving at the beach we checked in and I went my own way to grab some beers at the bar down the boardwalk. Met a friend and had 5-6 drinks. Came back to the hotel room and engaged in something else that I am not proud of; took a few hits of marijuana that I got from a friend. Yes, I was attempting to self medicate my anxiety and be "laid back".
Later that evening I went out to see a band play, and nearly got into an accident because a few guys in a large truck ran a red light. I yelled, got upset at the guys, and subsequently shattered my wife's SUV's front windshield with my fist. After this, it took me quite a while, but I calmed down but still felt upset. I ended up going into the club to hear a band play, had another 6-8 beers over 2-3 hours, and called my wife to pick me up since I was drinking heavily. I won't go into the windshield aftermath, but it wasn't pretty. However, when getting back to the hotel room, I drank more Pepto because my stomach was sick and then puffed on another magic pipe. This type of binge/heavy drinking/behavior/smoking/Pepto continued the entire 6 days until we came home. Again, I am not proud of this behavior nor do I condone it. I was simply out of control and I know that now.
Since being home I have been experiencing many of the same symptoms posted on this board for the past 7 weeks. I constantly go back through my head attempting to find reason or logical solutions to the symptoms I am experiencing, such as too much Bismuth (heavy metal), something in the weed, alcoholic neuropathy, anxiety...what?
At home:
Symptoms as mentioned really started in my left eye on the day of vacation. As I was laying in bed some evenings on vacation I noticed both of my lower legs felt "nervous" or "restless". Couldn't put my finger on it, but the feeling eventually went away. After waking up the next day at home I started getting a frequent twitch in my left elbow area and also my right calf muscle. As this began to concern me, over the course of the next week the twitching spread everywhere, especially bad in my calf muscles, right calf being the worse. Every since the twitching is in my calves, thighs, lower back, upper back, stomach, buttocks, sides and tops of hands, forearms, back of shoulders, back of neck, front of neck, lower lip, right eye, left side of my scalp around my temple, and the list goes on. The twitching I could only feel when at rest or lying down, but when moving, I couldn't tell it was there. I also started feeling tightness in my calves when I walked and the twitching would get worse after I used my muscles. The tightness went away eventually with "walking it off", massage, or stretching, but still did not feel right. And I hated the idea that I seemed to have exercise intolerance by getting tight calf muscles and sometimes thighs.
My right arm near the elbow would also get stiff from minor use and then I would feel like my right thumb and index finger would be tight and not want to cooperate well with me. Around this time I also noticed tinnitus, or ringing sounds in my ears, but ALSO a sort of humming noise in my right year that comes and goes. So long story short, I am freaked out ALL the time and constantly dreading going to bed because I know what it means. Twitching, vibration feelings in both lower legs, and twitching in other locations. I did notice the twitching also seemed to get worse if I got angry or upset at something. But use definitely triggers the twitching.
Doctors:
I first visited my general practitioner for my symptoms about 2 weeks after onset. Doctor did the usual strength, reflexes, and coordination tests and agreed that everything seemed fine. Although my knee reflexes seemed high to me because when he nailed my knee, it would fly upwards and then back and hit the table. He thought nothing of this. He then did quite a bit of blood work including antinuclear antibodies, erythrocyte RBC test, CBC, magnesium, vitamin D, calcium, and full metabolic panel. The only items that came out off were slightly raised RB erythrocytes (19) and my vitamin D was as low on the normal scale as you can get. Doctor told me no more Pepto or alcohol and to give this a few weeks to clear up. Plenty of water and rest and try to exercise. I essentially followed none of this advice except water. Drank beer several days a week, would drink shots of scotch to put me to sleep at night, and didn't exercise except walk around my house 2-3 miles a day, per my pedometer.
Next doctor visit was a week later because I was getting nerve pain in my right calf and numbness in my left big toe. It felt asleep all the time. This GP checked me out and found all looked, even with the supposed hyperreflexia that may be present in my legs. I cannot recall if my legs reacted the same this time as last, but she thought all seemed ok and I was worrying way too much about my claim of having ALS symptoms. I nearly broke down and cried ( yes a 4o some year old man who is three times her size ) when I told her this entire situation is negatively affecting the quality of my life due to the anxiety and worry.
A week later it was a local neurologist. He asked my background, I gave him the same boring story I am telling everyone here about the Bismuth, weed, yada yada. So he did a physical exam, performed a sort of hammer test on my muscles to see if he could get them to twitch, and some of them responded with twitching. He said my strength was impeccable or at least seemed to when I made the bones in his fingers crack when I squeezed. But he did call out the hyperreflexia of both legs, but stated that it could very well be from be being overly anxious. And yes, I was overly anxious with a BP of 155/95 and cold clammy hands and feet. That's my mojo it seems. So he said, I do not think you have ALS, but I want to get an EMG as soon as possible. How about now? Well the lady who conducts the tests was off work, so he scheduled me for 3 days later. He also did more blood work (I had to ask him for Vitamin B and Lymes disease) that apparently came back "ok." I never did get the results.
Like a coward, I did not keep the EMG appointment because I was hoping all this would settle down from maybe the Bismuth or something in the marijuana intoxicating my CNS.
After my visit with the neuro I was very shaken up. To the point where I was in panic all the time. I came down with bronchitis and a sinus infection that I treated at home and subsequently came down with laryngitis. About a week later my voice began to come back, but has never been normal in the 5 weeks since I got sick. Sort of raspy and will give out a little if I talk too long in meetings for work. I do however have bad post nasal drip and wake up with a lot of phlegm in my throat, fall allergies, a little continued chest congestion/cough, and I believe dealing with sleep apnea. I will say that I am looking to anything other than ALS for the voice changes.
I also began to have sleep disturbance where I would wake up and feel a vibration/tremor feeling somewhere in my jaw/tongue and sometimes legs. I could get this to go away by relaxing and reading an article on my phone after about 10 minutes. Unfortunately this lead to 3-4 hours of sleep per night in an exhausting rollercoaster of misery and self loathing. The vibrating/tremor of my jaw would and still does scare the heck out of me in the middle of the night (only time I get this) and the twitching just kept bringing back ALS thoughts...always. I would also begin using whiskey at night to get drunk to put me to sleep, or beer...(no marijuana) . I also noticed that alcohol would calm my twitching down anytime, so I was drinking regularly again, but perhaps it made things worse the next day with the twitching.
Even when driving my car for periods of time, it would make my right left twitch all over but resolve after a few minutes of stretching or maybe getting my mind off it.
Current
It has been 4 weeks since the EMG appointment and 7 since this started, and I have another appointment with a neurologist Monday of next week. I can say that I am frightened to death to take this further,..but here is what is giving me hope this may not be NOT ALS:
1) This forum and reading on BFS.
2) I have been doing pushups for the last week on nearly a daily basis. I can usually muster about 70 throughout several sets. I also pushed up 210lbs of flat bench the other night several times fairly easily. Keep in mind, for the last 7-8 weeks I barely got out of the chair other than to use the bathroom, get something to drink, or anxiously pace around my house in fear and obsessing. I have been working from home and isolated mostly because of fear and anxiety.
3) I have been doing body weight squats in 3 sets of 12 several times a week and am walking a few miles per day. The squats at first made my legs feel tight, kind of weak, and like jello. But I guess I'm not used to lower body exercises like this since I haven't done them in years...other than run. I also was able to do single leg extensions with 100lbs 5-8 times without much trouble.
Sometimes like today I jogged for a 1/2 mile and walked the rest, then came home did 3 sets of body weight squats, went to the basement and did 3 sets of 10 on bench press with light weights (150lbs), and then washed my car. Although my legs felt very stiff and shaky while washing my car from the up/down of cleaning and drying, I keep reminding myself that I have been a couch potato for nearly 2 months and am just getting back into this. So, validation (excuse) for legs feeling off.
4) The twitching is very random on my body and moves around a lot although more present in legs. However, the twitching overall has improved the last 2 weeks. If I had to quantify it, I would say 40% improvement. It is less frequent and at times less severe. I also no longer feel the vibration feeling in my legs at night and my legs rarely keep me awake.
5) Doctor prescribed me a low dose of benzodiazepine to help me sleep. The benzos actually seem to help the twitching and anxiety also....somewhat, although they are the lowest dose you can possibly get. I also stopped drinking any alcohol for the last week since I want to clean my body -and- act up.
So that is my story and where I am. Scared to death, was beginning to think about the end of my life constantly, obsessing over it, driving my poor wife and mother insane by the constantly questions, panic, and talking about ALS. Lately, things have been slightly better with the benzos, increased exercise (that gives me hope that I am not very weak), and reading this board and everyone's stories. I can say that my body just doesn't feel "right" during exercise especially my legs, but I again I am keeping hope that this is benign in nature, or almost ANYTHING other than ALS. Its times like this where I start to feel upbeat and positive, but I know one new or reoccurring symptom will beat me back down into the ground again where I cannot find hope.
I pray for healing and the opportunity to start my life over again and correct the things I know I was doing wrong; to be a better man, be a better example for my son, and live my life for Christ like I should have been for many years. Yes I am a Christian (if you don't believe in Christ, that is ok, that is your prerogative, but please do not bash me for telling my true beliefs) but I make many mistakes.
Next step, speak with another neurologist and will have to bite the bullet for an EMG regardless of my paralyzing fears and anxiety on the outcome. My mind goes from having hope that this is NOT ALS, to full blown, I'm 90% certain I am a dead man walking and where I am making plans to sell off assets and arrange my insurance providers.
Thanks for all who took the time to read, and hopefully someone can also empathize with this situation and help to also give me a peace of mind..
Last edited:
jimmylaw9
Peer Supporter
Hi read your post and without doubt your symptoms are completely tension related. Your anxiety is through the roof and you’ve identified that. Your running on unconscious tension and therefore experiencing all the associated symptoms you describe. The reason I’m so sure is I’ve probably had most of them. I’m presuming you’ve read the literature and the TMS concept is easy for you to understand. But my guess is like me it doesn’t go away until you make significant life changes to reduce stress and tension. I always thought I was dealing with things till the pain was so bad and I would have done anything. First thing I did was change literally everything to buy back time. Then relax treat myself really well and reduce as much as I could that was bothering me. I ain’t there yet but it took a while to come and I can’t reduce everything just yet. But I’m so much better after reading the books and making the changes. Classic burnout and I’m positive you will get better if you do the same
Progressguy
Newcomer
Thank you for the patience to read through the dissertation I essentially wrote, and to provide insight and encouragement. As you and others are well aware, going through a situation as such is very difficult and frightening.
I will certainly continue to review the TMS information and focus on lifestyle changes.
I think like most, at times I have doubts as to the true nature of what I am experiencing due to seeing someone suffer from ALS, but I suppose due to the nature of symptoms what you're advising does make perfect sense. To put this fully behind me, I will probably go through the medical testing required and secondly, do as you've suggested.
Your response is much appreciated.
Marianne Pineda1980
Newcomer
Marianne Pineda1980
Newcomer
I started having the same thing 10 months ago and I’m so scared to get checked ! I haven’t noticed anything else just the twitching and I have spoke to a few neuros who swear my symptoms do not coincide with ALS but I’m still freaked out and of course doubting them !
Jax7722
New Member
You'll be fine, its nerves. Once you decide for yourself that you are ok you'll feel better. your muscles twitch because you tense up. It took me two years to figure that out. once you made up your mind your fine the body will shortly follow.
Hey guys/gals,
For those worried abt your twitching, listen to those of us who have been around with it for years.....and yes, it’s def stress and tension related. I have been twitching for almost 5.5 years. Worried sick for half that time before I finally accepted the fact that if your are just twitching for months/years then you can write off the serious problems. One thing that never seems to be considered is that we are under constant stress of some sort and we are not intended to live this way, and sometimes our systems groan under the strain. You may need to reassess life and let some things go. Understand that some stuff should not be considered important and get rid of the baggage. Keep your mind occupied until you get over the worry hump. Realize it will take awhile for your system to wind itself down as your body adjusts itself and produces less chemicals like adrenaline.
For those worried abt your twitching, listen to those of us who have been around with it for years.....and yes, it’s def stress and tension related. I have been twitching for almost 5.5 years. Worried sick for half that time before I finally accepted the fact that if your are just twitching for months/years then you can write off the serious problems. One thing that never seems to be considered is that we are under constant stress of some sort and we are not intended to live this way, and sometimes our systems groan under the strain. You may need to reassess life and let some things go. Understand that some stuff should not be considered important and get rid of the baggage. Keep your mind occupied until you get over the worry hump. Realize it will take awhile for your system to wind itself down as your body adjusts itself and produces less chemicals like adrenaline.