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Muscle twitches and fasciculations may raise the fear of a neuromuscular problem such as ALS


New postby renee on Thu Jan 22, 2009 9:59 am

Hi I am a 31 year old female and over the past two weeks I have been experiencing muscle twitching. The twitching was preceded by arthritic like pains in the joints of the small bones of my hands. Three days later, I had a single twitch in the bicep of my right arm. For the next two days I had the twitch in the same spot only once, it stopped when I massaged the muscle. Then the twitches started spreading over my entire body. I began taking a daily multi, celadrin, curcumin, and 1 TBSP. of flax oil daily for the inflammation, and a cal/mag supplement. The joint pain went away a week ago. I twitch mostly in my thighs and eyelids, frequently in my calves, less frequently in my arms, and rarely but occasionally in my hands, feet, neck, private area, and back. The twitching is mostly a one or two second visible flutter that goes away on its own. Rarely, I have to massage it to stop it. I can make my eyelids twitch my squeezing them shut and opening them. For a few days my eyelids twitched alot, everytime I yawn (which I have been doing alot of since all this started for some reason) , touched my eye, cried ( which I have been also doing alot of too for fear of ALS), or thought about it just about. The eye twitching has gotten a little better, except this morning when I woke up with it twitching and couldn't get it to stop for 10 minutes! I also do not feel twitching when I a busy moving around or exercising. I only feel it in a relaxed state (sitting on the couch...lying in bed or standing still). I have to admit I am consumed with this being ALS. I can't think of anything else and it is driving me crazy!! I desperately want to see a neurologist but we have a $4000 deductible and my husband won't let me go. I have a less than perfect marriage and I am at his mercy concerning money. I am a stay at home mommy of 2 sweet little girls. I am so consumed with it that I am hyper sensitive to every move I make waiting for some sort of muscle weakness to appear. I have not had any, I am still able to do push up's and exercise daily. Yesterday, I felt a little more wobbly than unususal but I don't know if it is all in my head. My knees have buckled a few times over the last two weeks. They have buckled in the past but not this close together. My hands and feet have also been especially cold. I have also been yawning alot for some reason and from time to time I have a little difficulty swallowing and usually need to clear my throat of excess phlegm ( this is not a constant problem) . My speech has not changed. I have read alot about benign muscle fasc. and that twitches do not usually precede muscle weakness with AlS but that knowledge doesn't seem to be helping me. I guess I feel that if there is a chance that it can that I am not 100% safe. Is there usually obvious muscle weakness before the twitching starts or are they simultaneous? I am so sad all of the time and I just want to get this resolved. I am hoping that you can give me idea if my symptoms are compatible with ALS. If I were your daughter, would you be concerned about ALS for me and advise me to get an EMG? I had blood work done 6 months ago and I will list my results and other medical things below in hopes that something my click as to why I am experiencing all of this if you don't think it is Als. I am not on any medication other than tazorac ( a topical retinoid for acne).

Medical info
I have polycystic ovarian syndrome
Thyroid blood work done in july of 08
TSH low normal at .59 range .34-5.6
Free T4 normal at 1.45 range .58-1.64
Free T3 normal at 3.2 range 2.39-6.79
Estridol low normal at 34.5 range 24-114
Progesterone normal at .74 range .31-1.52
Testosterone high normal at 67.6 range 6-82
shbg low at 14 range 18-114
I am also very slightly anemic my hemoglobin is low at 10.8 range 11.9-15.8
MCh is low at 21.8 range 27-33
mchc is low at 23.3 range 30-37
but my hematocrit and mcv are normal which is why the doctor said only very slight anemia

Thank you so much for taking the time to listen and help. I am eagerly awaiting your reply. Have a wonderful day, Renee
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Re: twitching!

New postby renee on Sat Jan 31, 2009 11:43 am

I had a partial emg done yesterday. The nuerologist I saw said that my onset of symptoms is too rapid for it to be Als and he was quite sure but I felt he had his mind made up before he entered the room. He rubbed my biceps to see if he could get them to twitch and my right one did. He then waited a few seconds for it to "calm down" and them inserted the needle. The speaker and graph thing was totally quiet. Then he made me pull on his arms to flex and quickly relax and both the speaker and graph were quiet again. He said that was evidence enough for him that I don't have ALS He said that the speaker makes a loud tapping noise like rain on a tin roof when someone has als. What do you think...can i relax? I have another emg scheduled for Tuesday with another doctor just to make sure. I was uncomfortable with this guy because I felt like he was rushing through.
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Re: twitching!

New postby renee on Tue Feb 03, 2009 3:56 pm

Just an update, I had a full emg today and nerve test and both came back completely normal. He was extremely thorough and must have stuck me 30 times. The doctor said there wasn't a hint of anything suspicious. Praise the Lord!
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Re: twitching!

New postby gunner on Sat Feb 28, 2009 8:44 am



I have been down this road several times over the last 15 years. I know with all of the hypochondriacs flocking to Lyme Disease, it makes it hard for people to want to explore that possibility. There are so many now trying to de-bunk Chronic Lyme Syndrome, but they are wrong.

I would suggest you start with what ever tests you can get covered with your insurance. If you want to do this on your own, the newer DNA tests for Lyme are the most accurate, but expensive.

I understand what it is like to have to deal with these symptoms. For me it was an episode where my memory and other cognitive functions were really effected for me to finally take the leap and get tested for Lyme again, as I had been treated initially over 15 years ago for the original infection.

Bad news is, in my opinion, you never really kick Lyme.

Good luck.
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Re: twitching!

New postby Kate on Wed Mar 04, 2009 1:34 pm

Dear Renee,

I am not a medical professional but I have the same twitching thing that you have. I have also had heart palpitations and chronic diarrhoea (sorry if that's too much info) and extreme twitching. Like you I couldn't stop thinking about my body and things were always getting worse and doctors seemed to be ignoring me. They all said it was stress related. I also have two children, whom I adore, they are a lot of work but I didn't feel like I was all that stressed out so I was sure the doctors were wrong about that. Finally I agreed to take some anti anxiety medication if just to get them to see that it wasn't that. Well... I started to relax within a few weeks. I stopped obsessing over my physical symptoms and they started going away. I just wanted to share this with you because anxiety is a horrible thing. If your muscles are tense then they will flutter when they start to relax (when you sit down or lie down at night). I know you said your husband was in control of the money but if you could scrape a little together and get a massage that might make you feel loads better. I don't know you but most moms tend to put a lot of pressure on themselves so I hope you will take your relaxation seriously and find a way to de stress or get some alone time. By the way I have polycystic ovarian syndrome too and that can make stress / depression / hormones even more wonky.

I wish you all the best.
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Re: twitching!

New postby renee on Mon Mar 09, 2009 8:46 am

Kate, thanks for the post. It always makes me feel better to hear from someone that has been in my shoes! I am still twitching unfortunately and it has gotten worse. I am sure that it is somewhat stress related, I have been under a bunch of it lately. I am just longing for it to go away. I will look into the things that you suggested. Thanks for posting. If anyone else has experienced this and had any luck getting it to stop, pleeeaaassse post your success story!
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Re: twitching!

New postby on Fri Apr 10, 2009 12:21 am

Hello all-

I was searching the web for people suffering with similar symptoms that I have had over the last year and a half,
and found this sight. The twitching you are suffering from sounds exactly like what I've had- along with the muscle
weakness, soar throat, hoarsness, eye pain, pins and needles, tremors, ear ringing, and cognitive problems. Mine started
after a pretty serious illness which I thought might be HIV- obviously a very stressful time- so I also thought it might be stress related. Most of the symptoms started, however, after the stress was over. And I still suffer with bouts of all of the symptoms- cycling through them every month or so. I've been to 11 doctors and done every test they could think of- and have only found some strange findings with my metals and hormones. I was put on hormone therapy- vitamin b shots, and intraveinous therapy with chelation to remove metals and other toxins. Some of it has helped- especially with my energy- but I never really felt like the underlying problem was addressed. I was also positive, in the beginning, that it was something like ALS or more likely- MS, but all the tests have proven negative for such worries. I then turned my attention to lyme disease- which I am currently taking a very strong coctail of antibiotics for, and the twitching continues unabated. My doctor did a simple gluten-sensitivity test, and I found out that I have a pretty serious sensitivity to it. My research into celiac disease has enlightened me to the fact that it is not just an allergy, but is actually a pre-cursor and catalyst for our immune systems to attack our own bodies (autoimmune illness). I haven't yet cut out all of the gluten out of my diet- as its more difficult than it intially sounds (there are plenty of books and online info to find out what not to eat)- so I can't say whether or not this is the answer I've been looking for yet. I haven't completley ruled out Lyme disease either, and will look into the DNA tests mentioned on this site to find out more. Lyme is a very difficult disease to pin down- as you will find. I'm determined to find out the problem before it causes issues beyond these symptoms, and also appreciate other's input on this issues. If anybody knows more--please post it here! The best to you! Philip
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Re: twitching!

New postby MG (Admin) on Fri Apr 10, 2009 4:59 am

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Re: twitching!

New postby renee on Fri Apr 10, 2009 6:27 am


We have exactly the same problems...weakness and problems with my throat,ears ringing, tremors,pins and needles, buzzing and vibrating sensations, eye pain !! I also have some trouble swallowing from time to time and a strange feeling like my entire body is pulsing. It is weird. I have seen 3 neuros and 1 regular md and have had all of my tests come back normal. How long have you been twitching? I have been twitching for 3 months straight, although recently it has gotten much better. i still twitch everyday but not as much...maybe under 10 times per day. My secret weapon so far has been just letting go of *** and trying not to think about it. My last Neuro looked me straight in the eye and said "You do not have ***". I just try to stay busy. It is not easy and I still think about it everyday but I am working on it:) Have you been to and learned about benign muscle fas. syndrome? Go there and click on forums..then general topics...then "BFS in a nutshell" aaron. If you have not, it will be a huge relief to you. I must warn you though not to dig on that site too much or it will make your anxiety worse:) My muscles are still not the same..they get tired much faster than they used too. I used to be quite the exercise queen. I think mine was some type of herpes virus that got into my nerve conductors and causes my muscles to twitch. I have 3 cold sores (which is very unusual for me) in a very short period of time, plus major stress, plus major exercising. I think that is what happened to me. If you have seen 11 doctors, surely if there were something terribly wrong they would have found it by in that and try to enjoy your life. If you have a serious NMD (which is sounds like you likely do not) then there is nothing that you can do anyway so just try to let it go:) Needless to say, I have never met anyone with such similar symptoms so keep in touch...if you find out what is wrong with you...let me know..we probably have the same thing!
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Re: twitching!

New postby Tigerlily on Wed May 13, 2009 4:11 am


With me it started after antibiotic use. For some time there was this sensation of internal shaking following Levaquin and Macrobid. then my left ear started fluttering. It felt and sounded like there was a moth in it. After that the twitching started. It was really creepy to look at my calves-always shuddering like when a fly lands on the back of a horse.

When I was little there was a movie called "The Tingler" at the local theater. It was about a giant centipede. There was a scene where a body in a morgue sat upright, possessed by "The Tingler." The seats in the theater were wired to vibrate or give a slight shock just at that moment so you can imagine the screams and chaos in the theater. Living with this twitching reminded me of the Tingler in a strange way.

I had a lot of tests and spent a lot of money on supplements. The diagnosis was fevers of unknown origins.

Here are some good things to google:

1. Muscle Twitching/Candida . I noticed if I took anti-fungals either prescription or natural such as Olive Leaf-even some probiotics-the twitching will get worse for some time. They call this die off.
2. Muscle Twitching/Menopause-Some hormones are neurotransmitters.
3. Muscle Twitching/Copper
4. Muscle Twitching/Alkalosis or Acidosis
5. Tetany
6. Muscle Twitching Anemia

I really have no idea what caused it but what generally knocks it down for me is Dr Ohhira's Pobiotics 10 a day for 10 days to start. Progesterone cream helps a lot but some say can make fungal infections worse.
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Re: twitching!

New postby tiredntwitchy on Fri Jun 04, 2010 12:56 am


I've been battling the same symptoms for over 2 years now...
I've been the HIV route, the ALS route, and still currently on the Lyme route...taking major antibiotics..which don't seem to help much.

I have the twitching, the tingling, the numbness, and even a oral yeast infection that won't be matter what I take. I get itchy bumps every now and then-
I get pain in some of my muscles..definately muscle weakness constantly- and sometimes debilitating fatigue that comes and goes...

Recently I was tested for the Herpes virus- and tested positive for both 1 and 2. I recently found out that these are all common symptoms of the herpes virus.
It infects the nerves - which can cause a variety of nerve conditions. You won't find the symptoms listed in any text book- but there is info out there-

I would recommend for anybody with these symptoms to get tested for Herpes. Im not sexually active except with my partner--we didn't have any reason to think we
had an issue with herpes...and no reason to think there was cheating involved. Its possible to have it without knowing- I'm speaking about that from
very personal experience.

Good luck to you all!
take care,
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Re: twitching!

New postby Prattha1 on Fri Feb 03, 2012 11:03 am

Hang in there my fellow twitchers. I have had twitches and tingles everywhere for the last month. Started in the calves and worked it's way all over my body. Really scary time for me, made me wake up in panic most nights. Thought there was no light at the end of the tunnel. Felt very detatched from everything. It was just me and my twitches.

All I can say is since I starting taking calcium/Vit D and any other vit/min that I could take safely and eating nuts/Banannas. Fish(all the good things plus a healthy dose of sleep and a little exercise I feel better.

My legs still have odd twitches and ache but I think they are healing. Starting to feel like my old self again. Hang in there and have hope

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Re: twitching!

New postby Kellogg2010 on Thu Mar 15, 2012 4:12 pm

Hi Guys,
I am totally with Renee and Phillip, have had strange eye twicthes, ear Ringing (tinnitus), spasms, tremors and the feeling,
like my whole body is fluttering. Like Phillip, I thought mine was started by HIV, witch I tested negitive for, but tested
positive for Herpes-1, my doctor says I should not be feeling like this because of herpes, but like Phillip said, I have found
that this virus can do strange things with your body. I also had swollen lymph nodes under my arm and a strange rash on
my chest, that has not gone away. Just tested for Lyme Disease, with also can back negitive. My biggest complaint is the
tinnitus, which somedays just drives me nuts!!! The twitching has gotten better, since I received all of my tests back, but
still seem to do it in bed, when I am the most relaxed. When I was really stressed, it was ALWAYS there, and I also thought
it was ALS or something else. IDK, if anyone has any remedies, please pass them on!
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Re: twitching!

New postby Alisonk on Tue Mar 27, 2012 7:22 pm

Hi all,
I stumbled on this sight as I was search for help regarding my muscle twitches...they have gotten progressively worse over the past few weeks. I have very low iron levels -- my ferritin (stored iron) was 33. I am taking an iron supplement daily, but it does not seem to be helping much.
I have already gone done the ALS route -- so so scary to even think of that, but its hard not to think about it! Also thought about MS as my dad has it. My neurologist diagnosed me with Restless leg syndrome -- but after researching that, i feel like it is something more.
Has anything helped anyone? I am a teacher and stand and move all day and I am typically okay on my feel, but the minute I stop moving, I start twitching! It is so frustrating !
Any advice , support would be greatly appreciated!
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Re: twitching!

New postby Kate H. on Sat Apr 14, 2012 9:25 am

I've read all of your posts and can't believe how many people suffer from these symptoms, but yet cannot find an answer. I also sufer with all of these symptoms. Fatigue, muscle twitching, eye pain, joint pain, sore muscles, acid reflux, etc. It all started after a very stressful time. My fourth child was born with health issues and I was severely sleep deprived for 4 months. I also was on major rounds of antibiotics for recurring sinus infections. The fatigue started, then the muscle twitching with tingling and joint pain. The fatigue, sore muscles, and joint pain has subsided, but the twitching remains. The eye pain comes and goes. I was tested for MS and was negative. Twice for Lyme antibodies, and both were negative. However, I heard these simple tests are not substantial and that I need to see a Lyme Literate MD. I tested positive for Hashimoto's Hypothyroid, Celiac disease and Adrenal fatigue. I started taking Vit. D, Sublingual B12, calcium, magnesium, and major probiotics. I also began sleeping more. The fatigue is just about gone, same with the sore muscles, and joint pain, but the twitching remains. I do not have pain, but it is very annoying and makes me concerned that something is wreaking havoc on my nervous system. I read that Celiac can cause unexplained neuropathy. I have been gluten free for over seven months. I also was tested for cross reactions and do not eat corn, rice, or coffee as these cause the same reactions as gluten for me. I have never had a cold sore or herpes. I've looked up all of the syndromes (Isaac's, Sjorgren's, Benign muscle fascillation, etc.). The only one that makes sense is PNH: Peripheral Nerve Hyperexcitability. But still, WHAT CAUSES THIS? My big concern is Lyme, but some people here have stated that the major rounds of antibiotics don't help. It has been three years since Renee has posted her symptoms, I am curious to know how she is doing today. I will post if I get an answer. Thanks for reading.
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