My symptoms started 2 years ago when I started getting tingling and numbness in my hands. My hands would tingle after exposure to cold. I also had weird feelings (numbness) imersing my hands in hot water. I also started feeling current sensations in my arms and arch of both feet. I had nerve conductions tests, EVOQ potentials and a MRI. Everything was normal. 1 year ago I started getting adductor stiffness and pain afer exercise. Then quadracep stiffness. I would feel good in the mornings but as I walked around, took care of my 2 kids, my quadracep and adductor muscles would feel tight and painful. My muscles seem to recover dyring my sleep. 3 months ago I started getting fasciculations in my quadraceps and about 2 months ago the fasciculations started all over my body. I get twitches in every muscles even my lips. Had a EMG which was normal and apparently my neuro exam was normal. SinceI saw the neurologist, who reassured me he doesn't think it's ALS, my twitches are stronger and I now have muscle stiffness in left anterior tibialis. I am very concerned and worried but not anxious. The neuro thinks I should see a neuromuscular specialist but there is not that many in Toronto. MY question is does this sound like Als (beginning stage missed by the EMG?), or muscular dystrophy?Should I be worried about a progressive neurological disease. I've also seen a Rheumatologist who felt this was not Rheumatologicaly based. Also, I can not exercise because I feel tightness and pain afterwards. I'm a therapist and my husband is a physician and we are very worried
Sorry to hear about your symptoms. It is somewhat reassuring that all of your testing including formal neuro exam and EMG has proven to be normal so far. It's important to keep in mind that not all twitching is fasciculations, which would show up on the EMG as such (There is a certain electrical pattern to a fascic and how it shows up on the EMG, so it's clear whether or not a twitch is a fascic if you have it during the test). And most importantly, the presence of fasciculations does NOT mean you have ALS. There are other diseases that can cause stiffness and fasciculations such as benign fasciculation syndrome, stiffman syndrome, as well as numerous muscle disorders and other rare but less serious diagnoses than ALS.
From the description of your symptoms, it is possible that you may have some kind of muscle disorder. A good way to start would be getting some routine labs to evaluate the integrity of the muscle such as CK enxymes, aldolase, routine chemistry, thyroid study, pyruvate, lactate and blood counts. Metabolic myopathies such as a mitochondrial myopathy are also possible. (exam and EMG can often be normal, has to be diagnosed by biopsy).
With the public gaining increased awareness of ALS I can understand your concern about your symptoms. I agree with your neurologist's suggestions about a neuromuscular specialist. A repeat EMG may also be helpful as your symptoms seem to have changed since the last one. GO to a major academic or clinical center. TOronto has very well trained neurologists there who can examine you and do the EMG. Talk to your doc about getting the referral and possibly some of the labs mentioned above. Best of luck
I too had strange syptoms about 4 years ago. Fasiculations, fairly constant in my legs, especially calves initially, progressing to arms and some in torso. Tests were all normal. I also had spells felt like every cell in my body was vibrating and that I was very shaky, but my hands appeared very steady. I'm a runner and I could still run for 10 miles, in fact it seemed to be all that kept me sane. I had no headaches. After about 6 months of this, my car overheated and I borrowed my son's car while mine was being worked on. It took a couple of weeks for it to be finished. When I fanally got back in my own car, I realized there was a fairly strong exhaust smell, which I apparantly had become used to. I bought a CO (carbon monoxide) monitor, and sure enough levels in my car were high enough to set it off. I had been feeling somewhat better in the summer driving with windows open. I read about CO toxicity and found that with chronic low level exposure, you may not realize it. Fasiculations are common after CO exposure and can last a lifetime. It's been 4 years since I got rid of the car, and I have mostly returned to normal. The "vibrating" spells were the 1st to go, and I only rarely have fasiculations now. PLEASE get CO meters for your house, work, car or anywhere else you spend time. Get the kind that have an actual number read out since low levels can cause this. My doctors never considered this etiology, but I suspect it is more common than they know. Good luck.
Go check out "AboutBFS.com". It's a web site full of great info on fasciculations and lots of other people with similar symptoms. You have what I would call a classic case of BFS, Benign Fasciculation Syndrome. I ain';t a doctor, but trust me, your doctor has already said it probably wasn't ALS, and after you read what everyone else on here has, as far as symptoms, you have the classic one's of BFS. I have them too... the shakey feelings without actually shaking, the twitches all over the body, some just once and other's (as many as 6 at a time going on at once, the fatigue, the weak feelings and stiffness yet no actual signs of weakness as far as real strength goes and there are about 100 other common symptoms of BFS, including numbness, tingling, hot spots and so on. Like I said, check out the web site "About BFS .com". The doc's on here have always been great and provide good, positive info as well. I have had what I think is BFS for just over a year now and the symptoms come and go. It's a real mystery and can scare the **** out of you if you happen to hear that ALS starts with little twitches, when in reality, most of the time, by the time you've felt the twitching going on, you've already had weakness set-in and will show signs of wastng muscles. We're talking REAL weakness, not weak feelings, I mean, not being able to close your hand or open a jar or hold a tooth brush... not just "feelings" of temporary weakness. Als is there one day and not the next. It is a progressive downward spiral that doesn't let up once it starts. Trust me, I've been watching and learning from these fins doc's on here for over a year now, they know what they are talking about and you would be amazed at just how many people have BFS as well as chronic fatigue syndrome and generalized anxiety, all of which make the twitches and symptoms worse and happen more often.
Thank you for letting me know about BFS. I will be chequing the web site. I tried to find something the other day on it but there wasn't a lot of info on the internet. It's very scary when you have all these symptoms and nothing shows up on tests. It makes you think that it's a beginning of something terrible. Thank you once agian. I wish the doctor had posted a repply. They seemed to have skipped my question.
It was so reassuring to me to read other's notes about fasciculations. I have been seeing a neurologist for 5 mos and for the most part my tests have been normal except two very small white spots on my MRI. The spots are a-typical of MS although they are watching for that. Anyway, he said the twitching and weak feelings I have are benign fasc.'s but until I read these notes, I just haven't felt sure. My question is, has anyone had dizziness along with these symptoms of twitching...such as a twitching feeling behind their eyes? No one seems to be able to explain these symptoms for me.
Hi. I read your post. Have you ever taken a quinolone antibiotic like Tequin, Avelox, Levaquin, etc.? Or, have you ever taken Macrobid? Please let me know. This is what caused my muscle twitching and such. Sharon
The only prescriptions I took before this began was an antiobiotic called "sulfa" I'm not sure of the full name. I had a baby in Jan. 01, 10 mos or so before this started and they gave me a type of Morphine for my c-section which made me very very dizzy for about 12 hours (room spinning). The dizziness I have now feels like my eyes are twitching or jumping from a nerve firing behind my eyes.
I've been having twitching for 4 1/2 months now, in varying degrees, been to two neurologists, talked to several others, including 2 UK neurologists (I also have memory loss, difficulty concentrating, constant worrying about dying and losing my mind, and several other anxiety-like symptoms and I wanted to see if we could rule out vCJD). Well in any case, I have no clue what causes mine either. Sometimes I just get what feels like bubbles under my skin, other times I get minor movements in my knee, hand or arm. Once or twice I've had a jerk, but that's extremely rare. I find that during periods of high stress and worry is when it gets worse. Still haven't stopped worrying about whether or not I have mad cow disease (vCJD) even though I know it's extremely unlikely, but I have been assured that all the symptoms I'm having do occur with severe anxiety including the twitching.
Has anyone diagnosed with BFS been tested for vitamin deficits? Also, has anyone done any investigating on external polutions (ie. pesticides, radiated foods, GMO's...) My husband has not been officially diagnosed yet, but his symptoms sound very similar to everyones that I have read.
He has problems also with his digestive system, so I am wondering how much diet (all foods ingested) may play a role?
Our food supply this century has gone though some drastic changes due to the food industry. Pesticides on our foods, radiation to kill bacterias, GMO, hydrogenated oils to extend shelf life, preservatives... blah, blah, blah...
Our bodies were never meant for such things to be incorporated into our cells. It is very taxing on our bodies to rid themselves from those wastes, I am only imagining that these may be why the medical community does not have a real diagnosis for this "Syndrome."
My husband is trying an all organic, gluten-free, no alcohol, less processed food diet to "experiment" on himself to see if it helps. I hope it does.
I've been diagnosed with BFS and have had numerous blood tests..Auto Immune..Potasium..Magsesium CBCA....Hepatic Function...AMYLASE..LIPASE...Lyme...and a few others I ca'nt remember...I get fasic's in my calves constantly...they feel like pop corn...Had them for over a year now....
I've had MRI brain..NECK...xray neck...EKG...Ultrasound and Cat Scan of abdominal area...all normal...I also started having Gastro problems...I'm not sure if its related to BFS but I never had these types of problems before...Good news is I hav'nt had any major weakness which rules out ALS...
Goodness me!! There are people out there suffering like I am. My problems started in Feb 01. Starting with pain in my arms and legs, the pain was unbearable and extremely worrying. I visited my doc numerous times only to be told I had a viral infection.
After 4 or 5 visits to the doctor, numerous anti viral medication prescriptions and the start of what I'm told were Panic Attacks, I began to experience muscle twitching, in the arms, legs, face, stomach, back - everywhere you can imagine. Like most people, my first thought was ALS, this ilness comes up quite a lot when you add 'muscle twitching' in a search engine. My life was a nightmare from that point, the panic and anxiety became worse and all I could think was how my son would cope without me.
My GP sent me to a Neurologist who arranged an MRI scan for me. The results for the scan (which seemed to take a lifetime) came back clear. My Consultant appeared puzzled and asked me to return for a re-assessment in 3 months. My problems persisted in this time although the pain had eased off. My appointment finally came 4 weeks ago and I was discharged from the Consultants clinic, I have to say I felt uneasy about this and began to feel alone with my problems. No one has even suggested any reason for my symptoms and I feel I am living a nightmare on my own, my GP has even prescribed me with Anti depressants now. The pain which I originally felt has now returned and I am told I just have to live with it and take painkillers for the pain (which dont work).
I am pleased to know that I am not going out of my mind and that there are other people out there suffering the same symptoms.
I know how annoying and scary twitching can be. I have had twitching for so many years- on and off. Just in the last year, I have had other symptoms and have had a lot of tests done which for the most part have been normal. One doctor thought I had a muscle disease, but my rheumatologist said I am fine and that the twitches are benign. Nobody really understands what we are all going through and how scary it is. Good luck to you all.
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