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Avatar universal

Muscle twitching, cramping, numbness in forearms. Fear of ALS.

Hello, I am a 29 y/old male.

Thank you for taking the time to read this...

3 months ago I was diagnosed with lower back problems (slight stenosis, and right facet joint arthritis). Referred to pain managment specialist and was given two spinal cortizone injections (lumbar/right facet joint). Upon resting at home, I noticed muscle twitching in my right calf muscle. I thought it was nothing at first but recently they have gotten worse. To make a long story short... I have had a nervous breakdown two weeks ago followed by deep depression. I think I have this horrible disease. I have seen 3 Neurologists (two of which at Universty of Penn) and my primary doctor and all have told me that I suffer from anxiety and to see a psycologist. The twitching has not stopped and I am noticing I wake at night to numbness in my forearms that eventually goes away. I also have noticed slight shaking/tremor in my right arm, a slight tremoring in my lower jaw, a slight indent in my right calf (which is more seen when flexed), cold sweats at night (waking drenched), sever eye floaters, sever left scitatic pain (not shooting/kills me when cough/sneeze), more blurry vision and a feeling of something in the back of my throat. I am walking fine, drinking and eating fine (although my stomach has been very upset these last weeks). I have also been crying to wife about all this every other day. I am at a loss here as I feel my life has been taken from me. I have had a cspine MRI to rule out fibro, bloodwork for vitamin deficancy all negative. The univeristy DRs did not recommend an EMG. PLS help!
40 Responses
Avatar universal
The fact that 3 neurologist have evaluated and examined you, and not found an abnormality is good news and should be encouraging. Its good that they have not found a serious neurological disease! Based on your symptoms, there is no indication for an EMG, but check with your doctor if you have not asked already as I do not know your full case.

Sometimes the body reacts to stress and depression not just in emotional ways but in physical ways - the brain has control over th e whole body not just thinking and emotion. Getting the brain chemistries back in balance with therapy and medications like SSRIs will hopefully resolve these symptoms also.

Good luck
Avatar universal
Your symptoms do not indicate ALS to me.

Good luck!
Avatar universal
This sounds exactly like what is happening to me.  I have been suffering symptoms like these as well as some skin rashes and bumps under skin.  I've had a battery of blood tests and a normal mri.  I am scheduled for an emg in two weeks.  My family doctor thinks this is anxiety and has prescribed paxil.  I have not decided whether or not to take it.  I don't believe I can go from a normal happy healthy 30 yr old to a stressed out mess for no reason.  Please let us know what you find out.
Avatar universal
Out of curiousity, have you, in the past year, been treated with a fluoroquinolone-based antibiotic (levaquin, tequin, cipro, floxin, etc)? If so, you may be suffering from an adverse reaction to that drug. These reactions can come on long after you are treated, and cause long-lasting symptoms like you are experiencing. The use of steroids often exacerbates the effects greatly.
Very often those hurt think they have MS, or ALS, or fibromyalgia, or a host of other maladies.

If you are suffering these weird symptoms, I suggest you check out the following sites:
Avatar universal
Nope, never took any of those drugs (at least I don't know if I did). Is this something that they would use in cortisone shots? I read that the dyes used in floroscopy can cause problems.

Forgot to mention... I'm also on Paxil and just got back from my first psycologist appt and was prescribed Abilify as well. Was diagnosed as being manic and bipolar. Not sure what else to do at this point... still scared, nervous and feeling twitches now in my face and arms. Wish I could wake up from this nightmare.
Avatar universal
Nope, they aren't in cortisone shots, but cortisone shots can increase their effects on people.

Levaquin, tequin, cipro, avelox are the most common flouroquinolone drugs.
Avatar universal
I don't want to say I "wish" I took those meds but... there is no explanation to these twitches. Forgot to mention the DRs all said I have BFS but I'm having a hard time with that diag. The reason being is the cramping in my calfs, the joints cracking and the indent in my right calf muscle.
Avatar universal
You may have realized this by now, but BFS, like fibromyalgia, is one of those diagnoses used when doctors don't have any idea what is causing your symptoms.  It isn't really a diagnosis, but more of an inability to diagnose.
Avatar universal
I just hope there all right... that there benign and nothing to worry about. What scares me the most is the vibrating in my lower jaw now. Its not like a tremor where my teeth would chatter when there together but more of a vibration. I also notice an engine noise when I plug my ears with my fingers. Man I hope this is all stress/anxiety. thanks for all your comments!
Avatar universal
My dad died from ALS and he didn't really have the twitching so much, ALS causes more muscle cramps.  So much so that you would need medication to stop the cramps. And then ofcourse progressive weakness.  Also, it usually starts in the hands and feet (the cramps).  It really is a rare disease.  I have posted my question in the "Undiagnosed" forum, and one of my problems is twitching.  So I go through days thinking I have ALS too.  My Neuro says anxiety.  My therapist says twitching is a big symptom of anxiety. Who knew? Take Care!!
Avatar universal
Sorry about your father... Regardless of what is happening to me I have a better awareness of this horrible disease. I am planning on donating to a good charity to research a cure for this disease. I work for a big pharma and we do nothing in terms of r&d for this disease. It seems its so rare that they don't want to even bother to try and find something because theres little to no money in it. I just hope that there are companies and researchers out there looking into a cure.

I wish you all the best and everyone thank you for all your comments. I'm going to get on with my life regardless of what is happening to me. I am 29 years old and have a wonderful life, wife, family and friends. I can't let some damn twitching ruin all of that!!! Good luck to all my fellow twitchy's :-)
Avatar universal
Does the Dr. have you on anti-anxiety drugs? Sounds like what I do when my anxiety is high.  I take med and it stops which pretty much indicates that the shaking- at least for me - is anxiety. I am not really the one to say this because I am not good at it myelf, but you need to find a way to reduce anxiety.  I have had several bouts of shingles and they seem to come out when I am most anxious and run-down.
Avatar universal
I am new to this forum, and I would like to tell my story. I am a 33 year old male, on May 8th I started to have twitching of my lower left eyelid that went on for two weeks. Note that the previous eight-nine months were by far the most stressful experience of my life, with worries about unemployment, though Following that I started to have twitches everywhere, though curiously enough the eyelids have now stopped. The left handside of the body is slightly more affected, though there are twitches everywhere except the hands and feet. No problems swallowing/talking at all, though I have twitches on the temple and the jaw sometimes. A doctor here adn a doctor in my home country which I recently visited tend to dismiss everything as stress-related, which could make sense, except I have never reacted to stress in this way. I saw a neurosurgeon who tested my reflexes/coordination on June 10th and tested my strength etc., he said I am absolutely normal, and an EMG on June 14th (three weeks into the generalized twitching) signalled no problem. Also, lots of blood work done, everything in order. I am now seeing another neurologist here in the USA to get a second opinion, as the symptoms continue. They tell me twitches usually are one of the last symptoms, so they should have already shown on ALS unless you have bulbar start, but as I said I have no problems talking/swallowing. I am terrified I might have ALS, despite the fact that the neurosurgeon (who also has a neurology qualification) dismissed the idea.
Avatar universal
Hello.  I just wanted to share some of my symptoms and findings that I have accumulated regarding these als signals.  I am 27 years old and used to be extremely athletic and physically fit.  Around Christmas time of 05', I started having numbness going down my left arm and extending into my thumb, pointer, and middle fingers.  I believe I had a panic attack because on Christmas day I went to the ER, thinking I was having a heart attack.  I had chest pain and shortness of breath along with the numbness down my left arm.  They performed an EKG and gave me ativan to calm me down.  I followed up with a workman's comp doctor and he came to the conclusion that I had a pinched nerve in my neck because the numbness came about when I would look up or left.  Then I began twitching a lot and also had chest pain.  I had an MRI to check for MS, an EMG, and bloodwork, all of which was normal.  I then saw my family doctor to give me something for anxiety (celexa).  I got laid off at work, I have an infant son, I am completing my master's degree, and my dog died.  Even with all that stress, what worried me the most was the twitching.  It is six months later and I still twitch all the time.  I'm finishing school, my son is healthy and a delight to be around, no more pets, and I got hired as a high school science teacher and start this fall.  You would think that if the twitching were stress related, it would have gone away.  
    Anyhow, I'm looking for more input from anyone with the same problem.  I also wanted to share my twitching symptoms since I can't seem to find much information on that.  I twitch all day, every day, every couple of seconds.  It's not too often that I have sustained twitching (although my left thigh has been twitching for four days non-stop now).  Most of the time it is just a "flutter" or a "pop".  I get these from head to toe.  I've had them in my feet, calves, thighs, buttocks, abdomen, lats, chest, shoulders, triceps, forearms, hands, neck, and head.  The most common areas for me are the thighs, thumbs (the webbing between the thumb and pointer fingers), calves, triceps, and abdomen.  If I'm busy, whether physically or mentally, I don't notice the twitching as much.  Once I sit down in the evening, I twitch constantly.  My left tricep will twitch then two seconds later my right thigh will twitch, then another body part, etc...  Also, it is usually only one spasm.
   I'm fairly certain I have had every diagnostic test performed.  MRI, EMG, EEG, potassium, thyroid, sugar, all normal.  I have not lost any strength to my knowledge and I don't think I have any rare diseases.  One nurse told me that twitching is common in people who have had any nerve damage.  I'm leaning toward that diagnosis, but I'm not satisfied.  Please share your input with me.  It helps to know that I am not alone.
    Thanks for letting me vent.  My wife gets tired of listening to me complain.  Your my new audience I guess.
Avatar universal
I just read your posting. I have been having weird symptoms over the years. It originally started in 1999 with Tachycardia..my  heart rate was high and when I would stand  my blood pressure dropped...I was having muscle tremors etc. I saw a Cardiologist who DX me with DYSAUTONOMIA..which is basically your autonomic nervous system getting short circuited. No cause for it...I was put on a Beta Blocker and an anti-anxiety med. In the past couple of years I have been fine.  I take Klonopin for anxiety.
In the past year I had 3 episodes of where my arms started shaking..almost seizure like..this happened last night as well. Of course I'm freaked out now. It seems that when Doctor's  can't find answers they end up putting alot of the blame on anxiety...They thought my sugar was low..but last night I checked it and it was normal. I am seeing a pain  management for disc problems in my neck. I have add injections on and off for the pain. Lately I've been having dizzy spells...and it seems like it started right after my last injections. The strange part is...I HAVE FLOATERS IN MY EYES just as you do..I went to 2 eye Doctors for it, and they say it is normal. I always had floaters..but now they are worse and it bothers me. I also has a period of twitching in my left eye..which they said could be stress..but it lasted 2 months.  My family Doctor is checking me for MS..maybe ordering an EMG.  I have an MRI ordered as well. I wanted to see if you have had any progress into finding out what is wrong..if anyone has any suggestions please let me know.
Avatar universal
Forgot to mention one other thing...

I still have the severe eye floaters, directly in my feild of vision and I have myclonic jerks (especially while lying to sleep) I have also been tested for lyme's and negative.

I'm going to a chiro for my original sciatic/groin pain and he seemed to resolve it (for the most part). I'm dizzy as I write this... and I feel my calfs twitching!:-)

Guess things just happen that you can't explain... I would think by now I would have seen some major changes like atrophy or weakness. What does everyone think? Anyone else out there in the same boat?
Avatar universal
My symptoms have been the same except for one thing happening lately... dizziness! I have an overall feeling of vertigo but the room is not spinning. It was so bad the other day I thought I was going to pass out! Aside from that I still twitch allover but constantly in my right calf. I have also seen another ALS specialist at UMDMJ and he did a full clinical exam without an EMG and he said no way ALS and he didn't even mention an EMG. I later called back his office and asked for another appt specifically for an emg. He said to go to my regular doctor!

So, I'm still here twitching away and constantly... I have a slight tremor and a vibrating jaw as well... constantly. I still have the indent in my calf muscle on my right leg... I can eat fine, talk fine, and still weight lift and run and ride a bike. No idea what to do or where to go next...
Avatar universal
Hi Nat,

Your pretty much in the same boat as me... but you had the EMG and I didn't (my neuros told me I didn;t need one). I guess were a mystery to the medical field. I have the tremors you mention, the tiredness, and definetly the twitching... 24/7! I'm scared like you because I'm so young. I don't know where to go to get help. I feel like my life is being sucked out of me day by day.
Avatar universal
Hi everyone...thanks for taking the time to read my book. I am 22 years old and was in good health. In early May, I began noticing that I was having muscle twitching in my rear-end when I was lying down in the evening. Along with the twitching, I felt a dull, aching, deep pain in my butt and hips -No sharp pains though. The pain went away for the most part during the day...along with the "butt" twitches. Then suddenly after a long flight to Europe, my right calf began twitching continuously. Soon, the twitching was affecting my whole body (both calf, thigh's, back, butt, lip, stomach, eyes, cheek, shoulder, forearms, feet, etc). However, there seems like there is more twitching activity in my legs. I also had intermal tremors that started shortly after I got to Europe. Now there is only a hint of tremors in the morning. Everything felt like it was buzzing. Heart pounding and palitations started along with sleep problems. I got home mid June and went to the hospital. CT scan, EKG, blood work all normal. I was then referred to a Neurologist. He did Thyroid tests, EMG, and an MRI of the brain. Soon after the Neurologist appt., I started to feel exhausted and had trouble breathing (like I couldnt get a deep breath). Sometimes I even had trouble speaking it seemed. I felt like I was in a fog! All of my muscles were tired. I could hardly brush my teeth my arms were so tired! The muscle fatigue has improved, although I am not at 100% I feel tired constantly. My doctor said my EMG, and MRI was clean...no trace of neuromuscular disease. He said my thyroid was a bit on the high side even though the results were within normal limits. He said the twitches were probably just "benign fasiculations". I was given beta blockers and Xanax. I am still concerned about ALS. I have always been athletic and healthy. I am scared out of my mind like many of you. I have had stress in my life for the past few months, but I have been through much more stressful times. Is there anyway an EMG could be wrong?? The only place tested for the EMG was my right calf, foot, knee & hip/back area. I am still afraid and these twitches are driving me NUTS! My body feel as if I have the flu without the fever and nausea. My only current meds are birth control (ortho tri cyclen- I recently switched from Seasonale), and tenormin (for the rapid heart beat/heart pounding). If anyone has any advice it would be greatly appreciated. I dont know whether to get a second opinion or go to an endocrinologist for the thyroid. Lately, I have been having bad days and good days where I feel better and have less twitching. By the way...twitching is hardly noticeable when standing. Maybe you can help guide me in the right direction.

Thanks for reading!

Avatar universal

It does sound like we are in the same boat. My advice would be to definately go to a Neurologist that will address the twitches with an EMG. If the one you went to wouldn't do it...find another. You are worth it.

I too remember having dizzy spells when this all first started. I was so nauseated. It has dissipated though.

I have eye issues as well. I have had pain behind my eyes for the last 3 months since all this started (similar to sinus pain). I went to the eye doc and he said all was Ok. I have these eyeball movements that are hard to describe...they almost feel like twitches, but they do it when I close my eyes to sleep (for the most part). It feels like a slight, quick movement and sometimes make me feel sick to my stomach.

I also started having sleep starts like you... I feel like my head is rollong off the pillow. My body doesn't jerk... it's just a falling feeling in my head. -So disturbing.

I feel like there is something that all these docs are missing. How does someone go from being perfectly healthy to feeling like this???
Avatar universal

New thing today... a twitch right between my index and thumb on my right hand. Its happening so bad that I cant even hold the mouse... its freaky! I may go to get an EMG back at the univeristy hospital in Pennsylvania. I'm just worried of the emg results... what if? So scared!
Avatar universal

Go get the EMG. I know it's scary...I understand. Waiting for the results is by far the worst part. Once everything comes back fine, you will feel a lot better.

I am originally from PA. Im in FL now. I had the tests done down here. For some reason all I hear about is how the Doc's down here aren't of the best quality. I am thinking about going back to Pittsburgh to get some more tests done...a second opinion...We will see.

Keep me posted

Avatar universal
I am to see my new G.P. tomorrow and I have put my past health condition on paper for the doctor so I do not forget anything during the initial consultation.

I will keep investigating the matter and will keep you posted if I find out what is happening and maybe this will be of help for someone.

Health Report

Previous to April 2006, for approximately one year, I was having on occasion sudden panicky awakenings from a sound sleep (usually just after falling asleep) and at times carpal tunnel syndrome symptoms accompanied the awakenings. In addition, I was on occasion being woken up by leg spasms or twitching; this has come about in the last few months. I thought at the time that maybe all these symptoms were related possibly to stress/anxiety.

In the evening of April 1st I was having continuous spasms in the legs and because the episode lasted 10 minutes or more I decided to go to VGH Emergency. While there, I had a CT scan and during the time there I had no symptoms and was released with recommendations to see a neurologist. The first such similar spasm attack was the previous night in bed when I had to get up and just waited until the episode subsided in about 10-15 minutes. After these spasm attacks I now have the pulsing, twitching, vibration, upper back
Avatar universal
Your last line is the key line to think about. What's first chicken or the egg?
I totally understand the anxiety it causes, however in my experience my symptoms were caused by anxiety, which caused more symptoms and obsesion, which again led to more anxiety. It's a vicious cycle, but consider what MDs, and people who been through anxiety already know, which is all these symptoms are common to anxiety and panic attacks.

Reading this thread, I have not found anyone that has a ALS or any seriously debilitating disease...
Avatar universal
I actually came across this discussion accidentaly looking for something else. I started reading a post by zny444 and this took me back to a time not so long ago that I am still trying to forget. Basically I am now 26 years old and living quite happily.
zny444 reading your post reminded me of what happened to me and I felt compeled to take the time and share my story with you. I have been perfectly healthy all my life, not particularily active however not overweight or anything else. One evening I ran up the stairs to my room and once I got to the top, I suddenly became aware of my hearth beat...which was rapid and very noticable. My initial instinct was that something is awfully wrong. This horrible fear suddenly came over me, and I felt myself going pale. I went downstairs and talked to my girlfriend at the time, just about anything to distract myself...for some reason I didn't want to say there is anything wrong to anyone. Next few days were very stressfull as spent a great deal of time thinking about that episode, thinking there is something wrong with my heart. Few days later while sitting and watching TV, not thinking of anything in particular I started having that same feeling again, my heart started pounding, this episode lasted 20 longest 20 minutes of my life. After this everything changed. I lived in constant fear and anxiety that something is wrong. I could not sleep, I would wake up at dawn with this aweful feeling of dread. I tried to keep working but could not concentrate on anything, and shortly after one evening while out with my girlfiriend and couple of friends fear overtook me and I inisted she takes me to emergency room. When I arrived my blood pressure was 160/100 and pulse over 100. They did an ECG, and the doctor came in respectfully reassured me everything was OK and that I am simply experiencing anxiety. I felt relived, however this was shortlived. I became different through the experience, I became overlly self aware. I began to notice every little twitch, ache and pain my body produced. I started having severe twitches of jaw, pain in my shoulder, stiffnes in my back lower neck musles and chest pressure. Heart palpitations were a daily routine and it kept getting worse. Tingly sensations in my face, my arms...I kept waking up numb. I had days when my vision was blurry, where I see little dots in my vision etc. The physical symptoms were unreal, and this only fueled my fear and dread. I was slowly convinced that something is horribly wrong and that I may actually die. I made an appointment with my family doctor, who put me through another ECG which was normal. Upon me insiting, he refered me to a cardiologist who made me wear a heart monitor for 24 hours and found nothing. Every visit made me feel better but all of this was short lived. I was falling apart and it was taking a tool on my relationship. My girlfriend kept insisting that I am becoming neurotic, yet I could not reconcile my physical symptoms with psycology. I scoured the internet looking for my symptoms constantly. I diagnosed myself with every heart dissease I could fit. My family doctor was convinced it was simply anxiety, yet I didnt think anything happened in my life to trigger this. He prescribed Lorazepan which is basically a tranquilazer. This achived me being outwardly calm but the turmoil inside continued and the physical symptoms were still there. After a week or so of this, he suggested I go to Paxil.
I didn't want Paxil, I was convinced something else was wrong. I doubted everything and everyone, yet I had rare moments when I looked back before all this and saw that I don't quite see things the same. But my life was falling apart and I just wanted this to go away, so I started Paxil. At first I felt like I was in a bubble and not much changed. However after couple of weeks, the palpitations slowed down and the numbness, twitching started to go away. Slowly I was able to start sleeping properly, yet I was still afraid and worried about my health. After 6 weeks of Paxil all my palpitations and physical symptoms were completely gonne, however the psycological damage was done and this was still there, but nothing like what I was going through during the months of that ordeal. Slowely over time this healed too. It's now been over 2 years and it now seems like just a bad dream. I am healthy, active however emotional scars are still there. I am not as confident as I used to be, I respect life and health more but the important thing is I am OK.
zny there is nobody in the world that can convince you there is nothing wrong, no amount of tests. (do your due diligence ofcourse). Ask yourself, if this doctor tells you you are OK, do you think this will all stop, or are you simply goign to think, well even doctor can be wrong. Do you obsses about your body, the way it feels, do you think about this constanlty. Are you afraid you will die from some awefull disease. If you can relate to this at all, take my advice and see a Psycologist, and hopefully they will prescribe an SSRI. I thank god every time I think about this, because if that went on for too long I am not sure I would have ever been mentally able to recover. SSRIs saved my life in a way. If anything search on the net, the physical symptoms of anxiety and you will find them all...to this day I can't belive what mind can do to a body! You are a young guy, chances of something being wrong with you are slim by this fact alone, let alone all the tests.
If you or anyone else would like to talk and find out more about what I've been through or share what you are going through please e-mail me at ***@****
Avatar universal
On my previous post I should have mentioned that I am a 43/m and was until the symptoms showed up in the past year in good health. I have been stressed many times over the years but could always overcome. I rarely visited a doctor and when I did it was usually for minor problems.

My new G.P. gave me an overall general examination and has given me a sampler of Effexor XR and asked me to take it for two weeks and then to see him again. I am hesitant on taking any medications but I may have to in the end if these symptoms do not resolve themselves. I have a hard time believing being anxious/depressed can cause these physical symptoms but as genesisx said, the MDs have seen these symptoms before and I even asked the doctor if I should get another neurologists opinion and he said I would be just
Avatar universal
Well, I'm back on again because I've been twitching for the past couple of days.  I've read all the new comments and I thank you Carol for your insight.  I have tried magnesium and potassium pills with no avail.  I've had my potassium levels checked twice and everything is normal.  I've been researching MS and it's symptoms.  I believe I have many of the symptoms, but with everyone's postings on this sight, I feel that I suffer from anxiety (so does my doctor).  Specifically a form related to being a hypochondriac.  I feel that I am extremely aware of what my body is doing at all times.  I will sit and stare at my arms or legs and wait for them to twitch.  Then I will work myself up to the point of panic.  I think I'm going to have a heart attack, stroke, or seizure.  I eventually work through these episodes (which occur about every night)and fall asleep.  Usually throughout the day, I don't notice the twitching as much.  It is in the evenings when I sit down and try to relax.  What makes me think it is all related to anxiety is the fact that if I stay busy either physically or mentally, I'm okay most of the time.  When I go to the bar to play games and drink with my friends, I don't usually notice the twitching.  When I'm involved mentally with something (poker, homework, thinking about this upcoming school year, teaching my son something), I don't notice the twitching as much.  Notice I always use the words as much or usually.  This is because sometimes when I am busy I will notice a twitch or a weird pain.  This will start me thinking negatively and can ruin my good time.  Lately I've been feeling dizzy and get weird sensations when I move my eyes left and right.  My wife thinks I'm crazy and so do I.  I will consider mentioning Lyme disease to my doctor and maybe even a psychologist.  I do hunt and fish a lot, so maybe I do have Lyme.  For more insight on my backgroud, scroll up to my first posting  (bu).  That will explain more.  The purpose of this thread is to vent about my twitching and to give my diagnosis to everybody....We are crazy.  No, I really do think that we are too in touch with our bodies and we need to find a way to relax but keep our minds busy.  Well, I need to get more schoolwork done.  Hopefully the twitching will subside enough to let me fall asleep and start another twitchy day.  If anyone comes across a drug that stops twitching (a legal one please), please send me some.  In the meantime, I'll keep twitching.  Email me if you have the same symptoms as I do(***@****).  I have had numerous tests and have researched enough to get my medical license.  Maybe we can find a cure.  Maybe we will win the lottery as well.  Thanks for listening (reading).   Joe
Avatar universal
This is in response to a post by Neuron a while ago.  Recently I have been under an incredible amount of stress.  I think I am suffering from some form of acute anxiety as a result.  I have felt dizzy, had a slight headache (which I contribute to constantly grinding my teeth due to stress), pain in my face, teeth and jaw which I also contribute to bruxism, trembling in hands and worst of all weight loss (mostly muscle loss very quickly).  

I am responding to you, Neuron, because I see that you were on both Accutane and Minocycline.  I too was on Accutane for several months about 5 years ago and have been on constant Minocycline for acne for the past 5 years.  Is it possible that these medications could  be contributing to my symptoms?  I doubt this is the case, but was wondering if you or anyone you had talked to had made any connection.  Thank you for your help and thank you to anyone else who may be able to help as well.

By the way, I am 20 years old.  I don't think I am showing signs of ALS, but is it possible in a 20 year old?  I really think it's just due to the intense mental stress I'm going through.

Avatar universal
As far as I know there is no data on Accutane and Minocycline having a synergistic negative effect. However, anything is possible and especially with accutane we are in effect guinea pigs.

If I knew then what I know now I would of not taken Accutane, which turned out to be overrated and did not work well for me and in fact made my neck acne worse but cleared up my back and chest for a time. I did not have any anxiety problems or twitching while on accutane and I have been off it for a long time so I do not know if there is a connection. I talked to other people over the years who regretted taken accutane but not because of anxiety, twitching, muscle weakness or weightloss.

The best drug I found for acne was minocycline which I only took once a day, 100mg dose for several years. During that time I felt fine but when the anxiety like symptoms started; before the twitching/spasms, I felt it was necessary to stop using it and even off the drug my skin is fine. Turning 43 this year my acne is finally settling down and I still get the odd one but the less care I give my skin the better my skin looks! The more touching/washing the more irritation and this exacerbates the problem. Minocycline has a good track record for safety but not everyone reacts favourably to medications and rare side effects do occur.

How much minocyline are you taking and can you stop taking it and live with the acne? And have you seen a doctor about your acute anxiety? At your age I do not think ALS would be the problem but get checked to give you a sense of relief that it is nothing but anxiety.

Good Luck
Avatar universal
I am having the same stuff happening to me.

I am diagnosed CDC+ for chronic lyme disease.

normal lab testing is not suffecient..

Make sure you use Igenex or MDL labs.

muscle twitching, slight vibration tremor, everything....

anxiety... ect...

benzo's will not help this and only cause an addiction..

Try to ween off them very slowly if you can...

You need to check your hormones (endocronology), MRI's (neuro-which you did), Cardiac (tilt-table test), and get the proper testing for Lyme Disease...

The best way to taper off of Benzo's is to use valium and slowly taper if you have any kind of addiction to them.
see: http://www.benzoisland.org for more information.
Benzo's are poison and the drug companies don't tell you much.

Try to get on a good neurotransmitter natural support system.
L-Glutamine for Gaba, L-Trypophan for seratonin, L-Tyrosene for energy and MSM sulfer for any pains.
Avatar universal
I came upon this site accidently while searching for info on "twitchy thumbs."  After reading the posts starting with zny444 on 4/24/06 to the last post I see on 8/27/06, I feel like a weight has been lifted off my shoulders.  As with nat14 who posted on 7/31/06, I feel like I have a book to share with you all.  Let me try to begin at the beginning......I am a 48 yo female.  About 5 years ago I went through a divorce, which while it was not the most acrimonious divorce in history, it wasn't a pleasant experience.  Although I was stressed during this process, I didn't feel like I was any more stressed than I had been at other times in my life.  In fact, I had started dating a very nice man, had a very good job and had made a lot of friends.  On the outside, life seemed good.  But, that's when my mind/body started rebeling.  I started having every single symptom that everyone has posted on this forum.  It started with my arms going numb at night for no apparent reason.  I'm not talking about a numb hand because I slept on it, but both of my arms had gone numb.  Then I started feeling tingly in my hands  and a little twitchy in various parts of my body.  I would wake up at night and it felt like my body was vibrating.  Very weird.  I went to my GP who referred me to a neurologist.  I saw him and after an exam, he said he thought my symptoms were stress/anxiety related, said I should relax, etc.  I INSISTED that stress couldn't be the cause because I was no longer stressed - my divorce was final 6 months earlier and I had moved on and life was good.  I talked him into giving me more tests (MRI, CAT Scan, EMG - you name it, I had it)and every single test came back negative.  I was still convinced that I had some disease like MS, ALS, Parkinsons, or something so I called and e-mailed my neuro constantly and "begged" for a spinal tap, which was supposed to show pretty conclusively if you have any of the diseases I was sure that I had.  Because he could see that I would not be able to relax until I had the Spinal tap, he reluctently agreed to do it.  And of course it showed NOTHING!  

So, did I believe him and all of the tests?  Heck no, I found another neuro and went through the same drill with him, minus the Spinal Tap.  This neuro finally convinced me to go on an SSRI and we settled on Paxil.  He also gave me Xanax to help me sleep and he gave me Vioxx (while it was still on the market) for pain.  Even with these drugs, I was still having these weird body sensations, numbness (face, arms, hands, feet), tingling (hands, feet, face), twitching (everywhere, but especially the face and legs, hands and butt were involved too).  This neuro sent me to a pain management DR. who was very nice and understanding, but once again diagnosed stress/anxiety.  I was ready to scream!  Didn't they see that I was now in a nice place in my life and that the stress in my life had been months before???  But, this DR. gave me an epilepsy drug called Neurontin.  It is an "anti-twitch" medication but it also has anti-anxiety properties.  So, I was now taking 4 major drugs in addition to Allegra for allergies and Prevacid for GERD.  After several months, things did start to get a LITTLE bit better.  I thought there was less pain, and less twitching, and less tingling, and less anxiety.  I was probably so drugged up that I didn't know any better.  

Anyway, one day I had the bright idea to quit all of these drugs cold turkey.  In a lucid (?) moment, I knew that I was taking way too many drugs and that I needed to get off them.  (Strange that none of my docs said that to me!)  Somehow I had come to realize that maybe, possibly, stress was the cause of my symptoms.  I had started reading everything I could find on stress and I learned that stress and anxiety symptoms can show up a long time after a stressful event has passed.  Needless to say, going cold turkey off the drugs was a big mistake as you cannot quit any of these drugs cold turkey without major side effects.  I got sick (nauseous) and very dizzy (but oddly, not very anxious).  I went back to my GP who told me I should go back on the drugs and then taper off gradually.  I had been off the drugs for 3 days by now and told her that I was not going to take those drugs again.  So, she game me Antivan which I took sparingly just to relieve the major withdrawl symptoms.  This withdrawl took place about 3 years ago.  After a few days I didn't take anything again (except my allergy and GERD meds).

Fast forward to today, 8/30/06.  Although I still don't take any drugs (again except for allergy and GERG), I still have some symptoms, albeit minor ones.  I still can't quiet my mind, and I still stress out about almost everything from drivers on my commute to work, to "perceived" slights from co-workers, etc.  I mean, everything gets on my nerves.  I always feel some level of anxiety, even when things in my life are so good that I can't imagine them getting any better.  (Have I permanently branded a stress tatoo on my brain???)  I TRY to breathe deeply and tell myself to relax and that I can only control myself and not anyone or anything else.  Sometimes this helps a bit, but sometimes not.  

Now, for the reason that brought me to this forum in the first place.  While I was in the middle of my "stressing phase", amid all of the twitches I had, I got a really weird one that was in the webbing on my right hand between my thumb and forefinger.  It was really more of a spasm and it went on for about a day.  Needless to say, it really freaked me out as it was a VERY NOTICEABLE twitch and as I am right-handed, it was difficult to put on makeup, etc.  Anyway, it went away after about a day.  Then a year later, the same really weird twitch came back in the same place.  Again it went away after about a day.  I talked with my neuro about it and he said that everyone has some twitches going on and that it is normal, etc.  It came back a few months later for a few hours then left.  Well, this past weekend it came back with a vengence, again in the same place, the webbing between my right thumb and forefinger.  But this time my right ring finger also twitched.  I immediatly got the scarey rush of adrenaline feeling and my stomach flipped flopped.  I told my husband about it (I married the nice man I dated after my divorce!) and he was sympathetic but said I should just try to take my mind off it.  I tried but it's very difficult when your hand is twitching so much you can't even hold a book steady.  So, it twitched all day and I finally fell asleep that night with my hand sort of under my body to stop the jumping motion.  The next day it was pretty much okay, no real twitching, but I was SO anxious that I spent most of the day staring at it, waiting for it to twitch.  This morning I woke up at my usual 5:30 a.m. to exercise before going to work and it started twitching again.  So here we go again, adrenaline rush (and NOT the good kind), panic, etc., etc.  I execised, showered, and am now at work and it is not twitching but I feel half on the verge of panic that it will start again and never stop.  After re-reading this, it almost sounds too simplistic, but I think I would need much more room than this forum allows to be able to articulate everything that I have felt in the past few years and everything I feel now.  As I said, I feel like a weight has been lifted off my shoulders because there are other people who have the EXACT SAME SYMPTOM that I am so worried about and we have ALL been told that it is likely anxiety/stress that is causing it.  Although I don't feel like I am under any particular stress right now, perhaps my body disagrees and it's showing me that I am.  I also want to let so many of you know that your symptoms are EXACTLY the symptoms I had for so long and that I, too, didn't believe any doctor who told me that they were stress related, but I now believe the docs were right.  Please believe me that things WILL get better.  Your twitches and tingling will subside.  I know exactly how you feel, I really do.  I was there and I still travel back now and then.  You want your life back.  You want to wake up from this nightmare.  It is so odd to me (but also comforting in a way) that there are other people out there like me.  I always felt (and sometimes still do) that I was the one patient that my doctor had not diagnosed correctly and that I was going to die of some horrible disease.  Who knows, I still may (and yes, that worries me also!), but I have to try and make a concerted effort each and every day to live in the day and not worry about what could happen.  This is SO much easier said than done.  And, it is much easier to try to relax when my thumb isn't twitching madly!  There is so much more I could say, so much more I could expound on but I've got to close this.  If anyone out there would like to chat more, please feel free to e-mail me at ***@****.  Take care everyone and please know that if your doc says you are ok, then you probably are.  Breathe deeply.....

Avatar universal
I have been so scared.  In reading a note from BU on the webpage, every single thing you are going through sounds just like what I am going through.  I found this website, and was so grateful to see some things that sound exactly like me.  I have read everything I can on the muscle twitching/dumbness, etc.  
Mine seemed to start out with just the left knee feeling like it was twitching/trembling after walking. Now it is all over to include neck, back, etc.  It seems at its worse when I stop.  If I'm busy I either don't notice or it's not as bad.  As some of you have said, I feel like I watch my arms, legs, stomach, etc., just to see if I can actually see the muscles twitching.  It feels almost like that bubble wrap that pops, only it's under my skin and in the muscles.

You know how you feel after you exercise, or keep exerting yourself -- then your muscles feel trembly and skaky?  That's the way I feel all over.  I've tried magnesium.  I've tried a lot of things posted on this board.

Yesterday I left work and went to my Primary Physician.  I've been so stressed out about this twitching in all the muscles, that I worked myself up also thinking I was having a heart attack.  I've never had high blood pressure.  But yesterday it was high, like 150+ over 90+.  Doctor started me on a blood pressure medication that is supposed to have a relaxer type thing in it.  I was on Paxil about a year or two ago, but I came off of it.  

Does anyone use Ambien to help sleep?  I've been using it for years every night, and wondering if that could have something to do with this.  My doctor doesn't think so.  I'm also on Lipitor and Zetia.  

Another thing I'm wondering is the use of sugar-substitute products.  Today I thought I felt fine, not as trembly or shaky, but at lunch I had unsweet tea with one of the sugar-substitutes, and I've noticed the trembling and shaking a lot since lunch.

To make a long story short, I am seeing a neurologist on Friday.  I wondered if anyone that has written on this board, has had any diagnosis from all of this?  
Avatar universal
I am new here and have become a little nervos after seeing the special on Michael J. Fox the night. My right thumb has been twitching a lot more than usual lately. I don't take any prescriptions or other drugs other than aspirin. I work out almost everyday. I just don't understand why it does this. It's becoming very annoying...
Avatar universal
Well I'm no doctor but your nerves are killing you.  Way too much anxiety.  You can resolve this.  You need to learn how to meditate.  I believe we are all created and we try and live our life wiothout our creator.  But he hass an esential part of us and we just don't function properly unless we are connected to him daily.  He has a missing computer part and we don't function properly without him.  You are filled with anxiety.  Stop eating or drinking anything with caffeine.  Get off your computer. Learn how to mediatate.  Sit quietly and repeat a short phrase over and over like "Jesus I trust in you". Repeat it slowly and think abpout what trust means. Do this over and over. At leeast three times a day for 30 minutes.  At first this is impossible but stick with it and it will cure you.  The more time we spend with opurt creator the more grace we receive and the more peace.  Stop watching trashy TV.  Listen to relaxing music.
God Bless
Chris (been there done that)
Avatar universal
32/F been twitching for nearly a year.  It started in my eye and has spread to all areas of my body including my feet, tongue, and ears.  It is enough to drive me crazy.  I have been on Xanax for about 6 weeks coupled with Lexapro and a muscle relaxer, Zanaflex.  I was finally able to meet with a neurologist last week and was diagnosed with Geneneralized Anxiety Disorder (GAD).  Look it up and see if the descriptors fit your situation.  My neurologist told me that I am over breathing, but not quite hypervenilating, and this is causing my pH levels in my body to go out of wack, causing my muscles to spasm.  Treatment seems to be medication, exercise, and deep breathing exercises.  Hope ths helps.
Avatar universal
read your message. Ive posted afew times already. scared of ALS.tested one year ago emg mri negative Now with muscle cramps normal neuro exam except brisk reflexes i have twitching percievrd weakness left leg arm going for second opinion and having all these tests which are spread out over time Family best friend tired of it and think its anxiety causing symptons but cramps are new and all these people writing hear are saying cramps and brisk reflexes are early signs of ALS Now I am scared to death .Anyone else cramp besides twitching could this be ALS or could it be anxiety?
Avatar universal
My dad died of ALS, so when I started to have some muscle twitching recently, it was enough to send me to my laptop to do some investigation.  I was interested to learn that stress and anxiety can contribute to muscle twitching.  I do have some issues with anxiety and stress.  Recently weaned myself off of Lexapro (following doctor's orders), and do not want to take any more meds.  Am going to try meditation, more exercise, and deep breathing.  If muscles twitches get worse, I'll follow some of your examples by going to see my doc.  Also, I have six siblings, and I'm going to ask all of them if they have muscle twitches.  To:  upnorthjewel, would you feel comfortable telling me in which state you were born?  I was born and raised in Minnesota.  I always wonder if there's a geographical correlation for some illnesses.  Thanks for all the good info.
Avatar universal
I am reading this thread with great interest as I am also experiencing muscle cramps/twitching,along with extremity weakness which started four months ago.  

My problem started in early January of 2006 when I noticed a very loud ringing in my ears and I had an episode of vertigo that lasted three days.  Vertigo is not unusual for me as I have had episodes of it for more than 30 years (I am 47).  I took meclizine and the vertigo resolved but I was left with some very mild balance problems which had never happend before.  I was also feeling very fatigued.  In late January I began having a headache on the left side of my head that also caused a numb feeling on that side of my head.  This went on and off for a month with the tinnutis and I saw my GP.  She requested that I get a hearing test and see an ENT.  He diagnosed Menniere's which I have probably had for many, many years. He ordered an MRI to rule out any other cause of my symptoms. I had the brain MRI in May 2006 which showed multiple small focci of abnormal signal in the deep white matter and a large lesion in the left posterior frontal lobe.  During the MRI I felt twitching in my abdomen and then for a few days after muscle twitching in my left upper arm (the arm I got the contrast dye in).  It went away after a few days and I didn't think much about it. The radiologist felt the lesions were most likely  a demyelinating process.  I saw a neurologist a week after the MRI and he felt that my abnormal MRI was more related to early vascular disease.  I felt skeptical about this diagnosis because my cholesterol has been within normal limits for the last ten years and my BP is normal.  But, I wasn't having any other symptoms so I agreed to try Elavil for the headache and see him again in three months. I could not tolerate the Elavil and only took it for three days.  I have not had a headache in four months but still have occasional numbness and tingling in the left side of my head.

My numbness started in mid June along the front of my thighs and I also felt like my legs were "weak".  I could still do everything I normally do, I just didn't feel as strong.  In late June the twitching started again.  After two months it is now all over my body from the neck down. I also get cramps in my legs and feet.  My magnesuim levels are fine and so far all other labs have been normal. Like "bu" in an earleir post the twitches moves from one extremity to another in a matter of a few seconds.  I can visibly see the muscles twitching in my legs and arms.  This has freaked me out a lot!  I feel like a hypo-chondriac because everyday I am consumed with these symptoms because I feel like there is really somthing wrong with me.  Yesterday I saw my neurologist and he acutally laughed when I told him about my twitching and concerns for MS or ALS.  He says my neuro assessment is normal.  I had to ask him about an EMG and additional labs.  I am waiting for results on the chem panel and CPK and ANA titer.  He agreed to repeat the MRI of my brain to check for new lesions but that is only because I really pushed him about my sypmtons.  It doesn't feel so great to be treated like a nut case.

I had read an article about aspartame and MS and stopped using all products with aspartame last week (so far it has not).  I hope this helps with the twitching.  I have started Wellbutrin XL 150mg daily to help with my depression symptoms.  I do have a stressful job and I think that the years of continous stress are catching up with me.  I work in the medical field and I feel for all patients who get the brush off from an MD about a physical symptom that really is bothersome.  Just thinking about having ALS makes me cry and I have felt very emotional for the last few months.  After the MRI I plan on getting a second opinion about my strange twitching and cramps.  

My thoughts are with all of you who are experiencing these symptoms.  It is very helpful for me to know that there are other out there who are also going through this and I am not totally crazy!
Avatar universal
You are definitely not alone.  I have posted many posts on this forum.  I also am going through exactly what you are going through.  I finally went to a neurologist, who pretty much laughed at me.  First time he gave me Topamax -- that didn't help, seemed to cause me more of a headache.  I took myself off of it.  He said it would help the twitching.  I twitch all over, to include the abdominal area also.  This started pretty strong about a month ago.  I also came off Sweet N Lo, aspartame, etc., and caffeine.  So far I can't tell any difference coming off of it.  Because of all the stress from not knowing what it causing this, I now have high blood pressure (which I never had), also had to see a cardiologist.  Just had nuclear stress test and sonogram yesterday.  First response from technician was things looked fine.  I also went back to neurologist, who laughed again pretty much, he asked me what I wanted him to do, I told him an MRI of the head -- maybe if something is wrong from the headaches, swelling, etc., that causes the muscles to twitch?  I think he also thinks I'm a nut-case.  He would not approve the MRI.  Talked to me about HMOs, etc., and having to try medications first.  He gave me another prescription, which I never even got filled-- I want to know what is causing the muscle twitching, not cover it up -(even if the medications worked).  I also made an appointment with an "internist".  Maybe an "internist" will go to a little more trouble, and not make me feel like I'm a nut-case.
Avatar universal
A related discussion, To zny44 was started.
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