Scared to death.....

[B-Man]

Hi.  I know you get questions like this all the time, but please....I just need something to hang on to.  

I have been twitching (Fsciculating) for approximately 4 months now.  It occurs in my feet, calves, hands, face.  Mostly in my calves and feet and prodominately on my left side.  I've been to two neurologists and both say it is my nerves.  The fist wanted me on PAXIL which I tried and did not agree with me.  Then I went to a Psychiatrist and he put me on BusPar (which helped only slightly with my anxiety).  The second Neuro put me through the clinical exam and said that I have nothing to worry about because the exam shows NOTHING out of the ordinary.  I went back to him after a couple of weeks because my fingers started twitching and he seemed a bit aggrivated because I didn't believe him.  I asked him about an EMG and he said that he STRONGLY discourages it and he felt that it would not help my problem and that I would keep finding symptoms related to ALS.  I scheduled one anyway but that doesn't come until Jan 22.  He did a NCV test on me (because I am a Diabetic) to check the nerve conduction to see if the Diabeties might be playing a role, but that came out normal.  I don't believe I have any weakness although being so hypervigilant (SP?) I can feel a slight difference from my left to my right hand.  I can also make my feet cramp up very easily by curling my toes.....this scares me as well.  I know this posting is all over the place, but I am shaking even when I am typing this because I am so scared.  Thanks in advance for your response.
Regards,
Brian

[CCF-Neuro-M.D.-JT]

With the public gaining increasing awareness about the tragedy of ALS, it's understandable that people like you are concerned about the possibility of having the disease when you're experiencing unexplained twitching. Glad that you don't have any weakness as this is usually the presenting symptom/sign of ALS.  Twitching is NOT always fasiculations.  An experienced neurologist and EMG should be able to distinguish the two. But even if they are fascics, there are other conditions that can cause isolated fasciculations such as benign fasciculation syndrome or thyroid disease. In the setting of ALS, the presence of fasciculations represent degeneration of the muscle cells, which means that by the time you develop them there should already be some other symptom/sign such as weakness. Nothing in medicine or life for that matter is 100%. It's ok to get an EMG if you just want to be as sure as possible that you don't have ALS. Early signs of ALS should be picked up on the EMG by now if you're really having true fascics, so it should definitively rule out the disease for you if it's normal. Good luck, rest easy.

[Robyn56]

Hi Brian, I know how scared you are feeling.  I have had the same things going on for over a year now.  Mine started in approximately June, 2000.  I have the twitching in my legs mostly, but sometimes in my arms, abdomen, face, butt, etc.  The intensity changes.  Sometimes they are nearly gone, other times they get pretty bad.  I also saw a neurologist and I did have an EMG.  The neurologist said both were totally normal.  He said I did not have ALS (that was what I was worried about also).  He told me you always get severe weakness with that before you get the muscle twitching.  I am not sure if that is true, but I still do not have any weakness related to this twitching.  It is really aggravating sometimes, but I guess I am getting used to it.  It does not wake me from sleep at all.  My neurologist said sometimes people have this for years, can go away and recur again.  I know they call it "benign" fasciculation syndrome, but something has to be causing it, right?  I guess they just do not know the exact cause of this syndrome.  Feel free to Email me if you want to talk.  I know how scared you are feeling.  I felt the same way when I first started noticing the twitching.  Robyn

[Christina123]

Don't be scared.  Two neuros have said that you are OK.  I have been to the neuro many times, had a normal EMG and an NCS that was "a little slow" on one point in my right and left calves.  I twitch constantly in my right foot (it makes my toes move and I HATE that) and I also generally twitch randomly all over my body.  This has been going on since February of last year after I had a bad case of the flu while 7 months pregnant.  My neuro thinks it could be related to the flu virus and the lack of sleep due to my new baby.  I finally believe her (after too many stressed out visits determined that I was dying) and although the twitching is unnerving (I know) you should believe your neuros too.  You will see - your EMG will be totally normal.  99.9 percent chance it is merely BFS and will go away over time.  If you had ALS you would have experienced wasting and be pretty weak by now.  It moves that fast.  Don't stress, it will make it worse. I KNOW!  YGD

[B-Man]

Robyn,
Thanks for your post.  I just want to know "why?" this is happening.  I was fine 5 or so months ago.  I just want to go back to the way I was back then.  I feel like I am going to have a breakdown if this twitching doesn't stop.  I keep reading different things like "widespread fascic's are NOT normal".  I think I need that EMG to have something to say "this is why you don't have ALS."  I am only 32 years old and I know it is quite uncommon for someone my age to have this devistating disease, but I feel that because I have Diabeties, the normal stats do not apply to me.  My psychologist told me that "Lightning VERY RARELY strikes twice" meaning that being a Diabetic, my bad disease had already hit me and I should be concerned about that and not about having ALS.  I do agree (in a way), but I have had Diabeties for 20 years now and have kept it in GREAT control and really don't feel that this is from that.  I know you said I can email you, but where can I find your address?
Regards,
Brian

[B-Man]

Thanks for your support YGD.  I really appreciate the reassurance.

[Robyn56]

Hi Brian, my Email address is ***@****.  Robyn

[B-Man]

Thanks,
I will email when I am not at work.  Thanks again.

[bcrfowler]

Have you had your Vitamin B12 checked?  This can cause twitching of nerves.  There are other symptoms as well, but check out other reasons by searching the net.  Just type in Cause of nerve twitching, and see what you get.

[B-Man]

BFowler,
I have had my B-12 checked along with my thyroid levels and all were O.K.  I also had a Lymes test that came back "Borderline", so the Neuro put me on antibiotics and had it retested and it came back normal.

[degreesofsanity]

DO NOT search the net for "causes of twitching".  It will lead you exactly where you don't want to go.  BFS is much much more common than ALS.  The most common thing I hear about is weakness well before fasciculations (twitching).  The main thing you will find if you look up twitching is ALS.  But it is not the main symptom.

[B-Man]

Thanks,
I think the "NET" is what got me to the place I am now.  Basically screwed up and consantly scared.  It is the first thing I think of when I wake up in the morning and the last thing I think of when I go to bed.  It just plain ole' stinks!  Thanks for your post.

[my2midgets]

Hi...I too have been experiencing twitching for over 2 weeks...I went to a neuro this week who said fasciculations were not the first symptom.  He also called mine BFS but scheduled an EMG for January 17 and bloodwork......since my vvisit with him I now have muscle cramping and I'm going crazy!!!!  I m convinced I have ALS..I have 2 children and I'm freaking.....My clinical exam was also normal...I know what you are going thru.

[goodbill]

I've had similar emotional reactions to searching to find the cause of my symptoms.  In my case all the searches lead to MS, while my MRI's have been repeatedly normal as has my neuro exam by my local neuro and an MS specialist at a referral center.  We have to educate ourselves but be careful not to obsess in the process

I found a psychiatrist/analyst helpful in talking about fears and what they mean to me.  An antidepressant and an antianxiety medication (clonazepam, aka "Klonopin") have also been helpful for now.

I still have an EMG and musle biopsy coming up, though.  And I have neurology follow-ups and serial MRI's to go through.

I understand completely what you mean though.  Although our symptoms are real, they may not be explainable nor do they seem to be disasters.  We need doctors worthy of our trust, high quality second opinions when we must (go with a list of questions), get a plan for follow-up and what to watch for, and make a plan to deal with the present.  I too know from experience that stressing out only makes things worse.

Make partners out of your doctors.

Good luck, B-Man.

[Twinsplusone40]

Brian:

I was in the exact same place you are, a month ago.  So frightened that I had ALS I was almost incapaciatated.  I ended up having the EMG and the Neurologist told me that he saw absolutely no neuromuscular disease. All blood tests were normal.  IT HELPED immensely.  He also said that in his experience the people that he tested who did have ALS didn't even know that they were twitching.  They apparently didn't feel them.  I have thyroid problems, was using asthma meds and was drinking WAY WAY too much coffee. He also said that sometimes it takes time to go away. I am still twitching but "trying" to ignore them.   Hope this helps.

[lizbeth219]

What were your symptoms? and how long after they started did you have the emg. I have had a neuro exam and emg both normal but am still terrified I have ALS and the emg missed it --any words of advice
ARA

[B-Man]

Thanks to you all...you all made me feel a bunch better about my situation.  I thank God for people like yourselves.  I've never been through anything like this in my life (even with the Diabeties) and I don't know how to handel it.  It does help when people like yourselves and GREAT doctors that can explain things the way that can actually calm fears down that you thought were un-calmable (I don't think that's even a word).  Again.....Thanks so much!!!!

[goodbill]

I'm a doctor myself, but I have found my own situation equally terrifying. . . and "knowing too much" and trying to (partly) take some control over the workup didn't help much.

Your tone sounded very familiar.  Although I'm still having a hard time calming myself, I am beginning to realize that there is only so much in this world we can control ourselves and that one big job for us all to do is to be patient as we deal with things that we can't control or explain.

Good luck, Brian.  To you. . . and to me. . . and to everyone out there.

[Twinsplusone40]

My symptoms came out of the blue.  Mostly in my calf muscles and feet then random 'blips' all over.  I didn't have any weakness, no pain, just twitching.  However, this all started after my eye twitched for a month or more. I have read that eye twitching is caffeine and stress.  In fact, I was talking to several co-workers and they all had this too.  I had my EMG three weeks after my first visit to the Dr. from a neurologist.  I also had a nerve conduction study which was also normal.

[mainetrooper]

Hi,

   I'm a 20 year old male, I've been experiencing all the same symptoms you have. I started twitching about 6 months ago. Since then I've been terrified that I had the onset of ALS. Seeing that I'm only 20 years old, this would be an extremely rare case. I've had numerous tests taken, everything but an EMG. My doc said I had anxiety, and we both came to the conclusion I'm a "hypochondriac" so to speak. I've read many forums on Anxiety (GAD) and also hypochondrism, and alot of the symptoms these disorders produce can somewhat mimic ALS, even MS. Nevertheless, I keep thinking I have the worst going on. I'm going to have my FD refer me to a neuro and see what the possible problem could be. Just recently I've been experiencing quite a bit of muscle fatigue, but not really weakness. Anxiety? Maybe. Hopefully my trip to the neuro will help calm me down, and put my mind at rest. It's always relieving your not alone when it comes to these things. Thanks for reading.
-Paul

[lizbeth219]

Has your twitching stayed the same or got worse---also my eye twiched for a couple of months before the body twitching.  I  had my emg almost two months after the body twitching started--- how long was it after the body twitching started did you have your emg? Are you able to put ALS OUT OF YOUR MIND NOW and are you having a followup check up with the neuro?
Ara

[mwb]

i have had the same exact sypmtoms as you describe. My entire body has the bubbling sensation 24 hours a day, i also have   numbness and swelling in the feet, and also my lip has started to twitch. I have had a thoracic spinal mri, an emg, tons of neuropathy blood tests, and a spinal tap. Everything has come back normal except my doc said that the emg showed nueropathy but could not narrow it down. My neurologist is stumped and suggested i go to the mayo clinic or a major chicago university for further testing. i have been put on neurontin which helps a lot. I still cannot exercise in any way and i cannot walk for a long time without sitting down for a awhile. I am frustrated beyond belief and do not know where to go from here. I have yet to seek further testing due to frustration, expense, and lack of any more vacation time at work. I have been given every diagnosis in the world from friends and family members and although i appreciate them trying to help I am tired of hearing strange disease names and telling me its all in my head or i just need to see a chiropractor. Any suggestions from anyone would be greatly appreciated on where i should go from here and if you have had any simliar symptoms/situations you could tell me about. thanks for your ear. michael  PLEASE E-MAIL ME AT ***@****

[Twinsplusone40]

I can honestly say that it is getting somewhat better.  I had my EMG approximately 3 to 4 weeks after the start of the twitching. I don't know if this has helped but I do minimal caffeine and have started taking magnesium and some very good vitamins. However, after I left the Dr.'s office and had a excellent outcome on the EMG, I felt like a ton had been lifted off my shoulders.  Every now and then the old ALS tapes start up but I honestly am trying to put it behind me.  I do have a follow-up in a week and that is mostly because I see a neuro group and the first Dr. just wants to go over things. If you want to e-mail me I am at ***@****.  Hope this helps.

[degreesofsanity]

You guys need to go to this site.  Very helpful with group of twitchers there.....we've had every symptom and then some.  They will help to settle your nerves a bit.

http://neuro-mancer.mgh.harvard.edu/cgi-bin/forumdisplay.cgi?action=topics&number=65&forum=Neuromuscular&DaysPrune=365&startpoint=0

[twitch_city]

The only way you are going to relive your mind is by going to a specialist that deals with this stuff to rule it out.  I just went to a MDA clinic in San Francisco.  The doctors there are world class and some of the best in the world on that subject.

[Concerned lady]

I usually post on the Thoracic Outlet Syndrome forum at http://braintalk.org but thought I'd put in my 2 cents here:

Many folks with DIABETES use NUTRASWEET (also called Equal & Aspartame), as an artificial sweetener. Many "dieters" also use NUTRASWEET.

Did you know that NUTRASWEET is a major cause of TWITCHING, and SEIZURES, HEADACHES, and BLURRED VISION, and can cause blindness, brain tumors, mood changes, hyperactivity, upset stomach, and...weight gain?

I urge all "twitchers" to STOP USING ALL PRODUCTS that contain NUTRASWEET, AND/OR MSG (mono-sodium glutamate), and basically ALL ARTIFICIAL INGREDIENTS! Try this for a week, and see if you find any improvement, in the twitching.

There's an interesting book by Dr. Julian Whitaker, M.D. called "Reversing Diabetes" that diabetics (even Type I) could read.

Also, how many of you have Gastro-Esophageal Reflux Disease (GERD), and are taking ACID BLOCKERS as anti GER meds?

Acid blockers cause MALABSORPTION of Vitamin B12, protein, calcium, etc. With no Vitamin B12 being absorbed, people get PERIPHERAL NEUROPATHIES, due to nerve damage (including burning, pins & needles, pain, numbness, weakness, etc. This is discussed in a very supportive and helpful way on the PN (Peripheral Neuropathy) forum, also at http://www.braintalk.org

A helpful book that discusses holistic methods of combatting GERD is STOMACH AILMENTS AND DIGESTIVE DISTURBANCES, by Michael T. Murray, N.D. (1997), that talks about DGL (De-Glycyrrhizinated Licorice), Slippery-Elm, etc. etc.

If the holistic methods work (determined by lessening of GERD symptoms AND monitoring of esophageal damage), one could maybe stop taking nerve damaging ACID BLOCKERS (WITH YOUR DOC'S PERMISSION)!

There is also a good website called PATIENT INFORMATION SHEET ON REFLUX, by 2 ENT (Ear, nose & throat) docs, that gives helpful info on combatting reflux. The docs are James A. Koufman, M.D. and Dr. Postma, M.D. Their website is at http://www.bgsm.edu/voice/pt_info.html

The Massachussets General Hospital website neurological forums at http://www.braintalk.org are being updated tonight, but should be back "on line" tomorrow!

Good luck to all!

Sincerely,
Concerned lady

***@****
http://cantbreathesuspectvcd.com

P.S. Check on the thyroid function too!

[Robyn56]

Those things you mentioned are all good ideas, but I have had twitching for over a year now and I do not use Nutrasweet, I do not take acid blockers for GERD and my thyroid has been checked and is normal.  I am just learning to live with it.  Robyn

[B-Man]

Robyn,
I am with you.  I understand the good intention of the "NutraSweet" post, but I very rarely use the stuff and I am not a diet soda drinker (or any soda for that matter).  I also got my thyroid levels checked and it was whithin normal range.  One thing that I started trying this week was taking Calcium supplements.  I know I don't get my share of Calcium (never drink milk - only in my one cup of coffee a day).  It does seem to make a bit of a difference.  Even thought the twitches are still with me, they seemed to calm down considerably.  They are more like random twitches everywhere that occure every couple of minutes.  Once or twice then it moves on to somewhere else.  I am taking this as a "good" thing.  If this were ALS, I would think that the twiches wouldn't really slow down at all, only when the muscle is basically fully deteriorated.  I suggest on giving the Calcium thing a try if you haven'y doen it before.  I am not a vitamine nut, I just was on my last straw and I had to try something.  I wish you well and if you decide to try it, whish you luck with it.  It's really nice to know that I am not alone and crazy with this thing, but it is not nice to know that so many suffer from this disturbing, scarey disorder.  Good luck and try to have a fantastic holiday - to all!!
Regards,
Brian

[Concerned lady]

Dear Robyn and Brian,

Glad to hear you both DON'T use Nutrasweet, or ACID BLOCKERS! I like the idea of the CALCIUM (if it is compatible with any meds you are taking.) Also, MAGNESIUM (not in excess) works with Calcium! (if OK in your particular cases).

When they get the http://www.braintalk.org forums up and running again, you might want to check out their many helpful and supportive neurological forums, as an additional resource!!

Do you both also avoid MSG??? It can be HIDDEN in many ingredients! I've heard that MSG is a neuro-toxin! (Also it's called "accent").

Anyway, I wish you all the best!

Sincerely,
Concerned lady

***@****
http://cantbreathesuspectvcd.com

[Robyn56]

I did try the calcium and magnesium as suggested by my doc as soon as this all started.  He also checked calcium and magnesium levels in my blood which were normal.  I tried taking these for several weeks with really no improvement so I stopped taking them.  I do not think I eat many foods with MSG, but will try to be more aware of that in the future.  

Brian, you can still feel free to Email me if you want at anytime at my Email address above, or if anyone else with this problem wants to they can Email me too.  I tried to bring up the website suggested by the degreeofsanity post that was listed above, but could not get it to work.  I will probably try the braintalk.org site when I get a chance.  Hope everyone has a Merry Christmas.  Robyn

[Concerned lady]

Dear Robyn,

Muscles can spasm from many, many causes, including a potassium &/or sodium deficiency, and with dehydration sometimes a factor.

Are you on a very low sodium diet? Too much sodium can raise blood pressure in some people, but too little can also cause problems.

If medically OK in your case (and if you like them), RAISINS are a very rich NATURAL source of potassium. Some diuretics can cause a loss of potassium in the urine.

Too much potassium or too little potassium can both cause heart irregular rhythms, so don't overdo or underdo (it's a fine line!) on potassium. Food sources are safer than concentrated pharmacy sources of potassium, unless your doc says otherwise.

If you're not allergic to almonds, ALMONDS are very rich in CALCIUM AND MAGNESIUM, and have potassium.

You could try making what we used to call "GORP" ("trail-mix"), out of ORGANIC RAISINS, and ORGANIC ALMONDS, and see if it helps.

Of course there may be other things going on, too, which good neurologists, good vascular docs, good rheumatologists, good endocrinologists, good infectious disease specialists, good hematologists, etc. can help you diagnose, and I wish you and everyone good luck on solving your health problems.

Sometimes a very good holistic NUTRITIONIST may recognize symptoms and can steer you toward a good specialist doc, besides advising about diet and/or supplements!

Keep asking questions!

Sincerely,
Concerned lady

***@****
http://cantbreathesuspectvcd.com

[maxima]

I've had fascics all over for the past few months.  But it wasn't until I went to see my GP and I happened to mention the "twitching" that he said those dreaded 3 letters ALS.  Ever since then I was a mess.  I've recently started to have fatigue(I think, Weakness???) in my legs, feet, wrists and hands.  I've also had some fascics on my tongue, which really has scared me.  I contanly work out my tongue(everything) to make sure there's no weakness.  So much so that I get "burnt" feeling on my tongue at certain times.  NO weakness, though.  I use half of a .5mg Klonopin tablet before sleep at night to help me sleep which makes things seem so much better the next day.  Before July I hadn't seen a doctor in years but lately between a neuro(negative EMG 1 weeks ago and no signs of weakness during exam) and GP I have been seeing doctors constantly.  My neuro has said it is BFS even though I've told him about my legs and arms(negative EMG he said, enough said).  But, my tongue worries me.  He suggests a psychaiatrist.  Maybe he's right.

[lizbeth219]

YOUR STORY COULD BE MINE-i AM SO SCARED LIKE YOU--HOW LONG WAS IT AFTER YOUR TWTCHING STARTED DID YOU HAVE YOUR EMG---MY NEURO SAYS MY SYMPTOMS ARE CAUSED BY EXTREME ANXIETY BUT IT ALL SEEMS TO MUCH FOR ANXIETY IN MY MIND AND i CANNOT GET als OUT OF MY MIND
ara

[Concerned lady]

I have heard that MSG (mono-sodium glutamate/"accent") can cause or worsen ALS! That's a good enough reason to avoid ALL ARTIFICIAL INGREDIENTS in food or drink! Read those labels.

Also check on all possible side effects of any meds you are taking. AND check on any possible drug interactions BETWEEN all meds you are taking.

Good luck to all!

Sincerely,
Concerned lady

***@****
http://cantbreathesuspectvcd.com

[AJ1962]

OK, here's the deal... it sounds like ALL of you have one form of BFS or another AND anxiety!  Calm down!!  Print-out ALL of the posts that everyone else has put on here are READ them over and over again.  It helped me for sure!  Like the doc said... ALS comes-on with weakness usually before any twitching even occurs.  I have had EVERY symptom that ALL of you have and then some!  We are NOT alone!  And to the person who's doctor blurted out ALS at the first mention of twitching... lost that idiot!  That is SO irresponsible of a doctor to scare the heck out of you like that!  My own dermatologist was giving me a blood test and he saw my arm twitching.  I said I have BFS and it has been going on for about 9 months now... he said there's no such thing as BFS and said it was probably MS. I wanted to kill that idiot!  I have pretty bad anxiety and I have become a hypocondriac (spelling?) and you just can't say stuff like that to people like us!  That's irresponsible!  I dropped him like a bad habit for that.  There is obviously something going on here with all of us and it seems like the neurologist's on this forum know what they are talking about and we ALL thank them for their help and compassion!  So, to help calm all of your nerves down... like I said, print out ALL of the subjects in this forum where people have similar symptoms, then go look in the mirror... we ALL sem to be in the same boat and we are ALL fine!  Both of my GP's agree that I do not have MS or ALS, just some twitching, a good case of anxiety and some general fatigue brought-on by the anxiety and general everyday stress... like everyone else!  Stay calm!  I was a basket case before I came to this forum and couldn't function as a human... I mean I couldn't eat, sleep or even get out of bed I was so scared and depressed that I had ALS or MS. I'm 39, married for 15 years and have a beautiful 7 year old daughter... I can't die of ALS now!!!  What a horrible feeling and it overwhelmes your whole body and guess what?? Makes those stupid twitches and shakes even worse, just like the doc said!  Do you think MS or ALS would be controlled by emotion?  No way!  Would it simmer down when you calmed down like BFS does?  No way!  Listen to these doc's... they are smart and this is what they do!  We're all in this together so let's all help each other... as we are doing and will keep doing!

[AJ1962]

Also... never, ever, EVER look up MS or ALS in a home doctor's manual OR on the internet!!!  It's scare the **** out of you and the first and only thing they start-off with is twitching!  That's just not true!  You can blindly open-up one of those books, pick a subject and read the symptoms and guess what... chances are that you have had or currently have those same symptoms!  NEVER read those books and NEVER just type-in ALS or MS on a search engine unless you ant to be scared to death ... over nothing!  Trust me.  I was incapacitated for over 3 months because of one of these home doctor's manuals when my twitching first started.  it basically said i HAD ALS... they were SO wrong!  Benign Fasiculation Syndrome isn't even listed in any of these books.  Trust me on this... don't do it!  I never will again!

[Twinsplusone40]

Bravo!!!

[B-Man]

My Neuro called and had a cancellation on the 31'st of December.  I had my EMG done and it was Negative for the ALS thing.  I did shown signs of Carpel Tunnel in my right wrist and some Diabetic Neuropothy in my feet (wnich I can deal with).  I am going to take this news and start my New Years off right.  Thanks so much to all of your posts.  It helped considerably.  AJ's post hit it spot on I think.  Thanks AJ!!!!!

YAAAAHHHHOOOOOOO!!!!!!

[VAgirrrrrl]

Ok.  You are ALL going to think I am an idiot.....but....I HAVE to ask this question.  I WOULD look it up, but as scared as you guys are, I don't want to read about it.  Here goes my STUPID question...what is ALS?  I have never heard of it, or maybe I have and just don't recognize the initials.  Please, someone tell me or I'll be tempted to read about it and think I have it too.  Thanks!!!!  Also, this is my first time on this site and I absolutely love it.  I don't feel crazy anymore!!!!!!!

[wemeacha]

ALS is better known as Lou Geherigs disease. It is REALLY BAD.
Congratulations B-Man. aj1962 hit it on the head. Stay away from the net on ALS. I found out about a month ago that I have als. Any time I looked on the net at the disease it made me sick. the best thing I found to do is Pray because after you have it someone besides your self needs to be in control of the rest of your life.

[VAgirrrrrl]

Dear Weameacha:  I do know what it is now.  I'm so sorry that you have to go through this.  You are right about prayer though.  God can get us through anything.  Good luck!

Dear ddcile:  I looked up fibromyalgia and it is the FIRST time I've ever read anything that mentioned all my symptoms.  I was amazed. Thanks for your help!

Dear fairy dust:  Thanks for your input.  I wish you the best of luck.  We can all be here for eachother!

[B-Man]

Just to share with you all:

I went to the Neuro this afternoon and brought him a dozen donuts from Dunkin' Donuts.  I told him that it was taking up so much of his time with my panics.  He laughed and went on to ask me what was bothering me today.  I told him about my tongue twitching and all of my other twitches again.  My thumb hasn't stopped for about two weeks now.  It twitches about once every 30 seconds or so.  How annoying!!!!  I had a list of questions for him this time and I hope this will start putting an end to this misery.  My questions were as follows:

1)  Is tongue twitching any more of an indicator of ALS?
    His reponse:  No, not at all.  Twitching isn't an indicator of ALS at all.  The indicator is weakness, reflex changes, spaticity, and so on.  MANY people have twitches.  Some are more tuned in to them so they become more bothersome.

2)  What causes this twitching stuff?
    His response:  No neurologist can answer that question.  It is not known what causes this benign form of twitching.  Don't try to get an answer because you probably won't find one.

3)  How many people have you tested with ALS?  
    His response:  Aproximately 15 to 20 people during my practice.

4)  And you did the preliminary diagnosis?
    His response:  Yes.

5)  How many EMG's do you perform weekly?
    His reponse:  Myself....I do about 5 per week.

6)  My EMG indicated Diabetic Neuropathy and Carpel Tunnel in my right hand.  Can this diagnosis be mistaken and it actually could be the start of ALS?
    His Response:  No.  The results of these findings are entirely different than ALS findings.  Your needle portion of your EMG was squeeky clean.

6)  Can you say with 99.9% certainty that I do not have ALS?
    His response:  You have no signs of ALS. Yes I can.

After these questions, he went on to check my tongue for complete certainty and he said everything looks fine.  Bulk looks good and no visible twitching.

His suggestion was to see the Psychiatrist again and adjust the Buspar or add something to it.  He really feels there is the true problem of Generalized Anxiety Disorder and the things I am going through right now are VERY common in this disorder.  He said this is not my fault and that there is a mix-up in the brain which is making me get in such a panic about these twitches.  He said to try and take his word and go and live some of my life.  Don't let  it slip away worrying that I have some dreadful disease when absolutely nothing points to such a thing.

[ddcile]

Hi everyone. Taking radioactive treatment for my hyperthyroid and am doing well. They say my fibromyalgia symptoms may go away!!!!!! Ya hoooooooo. We will see. Vagirrrrrrl : there is alot of info on the web for fibromyalgia and it is helpful. They say exercise in warm water 3 times a week,  good nutrition, plenty of the right kind of sleep helps the most. Good luck! from ddcile

[PJD]

Hi Everyone I'm new to this site.  For the last month I have been worked up for tingling on my right side including my tongue.
I have had CT, MRI's, MRA, and ultrasounds of all arteries done as well as blood work. I have Lupus so of course they have gone with the idea that I have had a TIA. I'm now on Asprin and Plavix.

All tests have come back normal. My problem is my symptoms continued.  The last week or so they eased up but yesterday something weird dhappened.  After a 45 min walk yesterday I was sitting talking with a friend and my arm LEFT arm suddenly went very weak on me. It felt very heavy and weak. I went to go grab my beverage and I could in fact lift it, it just felt strange. I could feel touch to my arm but it felt kind of different I can't really explain it.  This hole experience only lasted maybe seconds and I have had this happen before.  

I have problems with anxiety and I keep wondering was this a TIA event or was this all in my head???? If it was a TIA why aren't these showing on my MRI's? I have an appt. with my doc on Tuesday and will tell him then. I hope I'm not making a mistake waiting but I have had every test in the book done!  Should I go wait 5 hours in a ER room just for a CT when I have already been through all of this?
Aren't I relatively safe on the asprin and Plavix?

Of course all this worrying I now have a headache and I'm driving myself crazy thinking the worst.  

I must sound crazy but I'm 33 and I have just been through so much lately and I'm getting to the point I'm scared to even enjoy my life.
Can anyone relate?   Please give me your thoughts to all my questions if you would it would be greatly appreciated.

Sincerly,
PJD

** just a note I'm currently getting a cardiac workup to rule out anything there.