Navigating Sudden Onset Twitches

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GlowGreen

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A bit of background... Sudden onset body-wide twitches in Jan '13 ( concentrated bilaterally in calves and feet AT THE MOMENT, previously I have had daily forehead twitching but that totally disappeared months ago, infrequent shoulder/back twitches throughout) . I have a history of anxiety, no other health problems and no weakness apparent to me.Today I finally got to see a consultant neurologist. His concluding statement was that he believes there is a 10% chance that I have ALS (so that's 5,000 times greater than the average person on the street) and he wishes to do the full set of tests. Bloods can be done next week (the lab is closed on a Saturday so it means another trip to the hospital) but the waiting lists for the NCV and EMG are "long at the moment".He had the bedside manner of a brick so I had to push for any answers but specifically...Does the body-wide distribution of the fasciculations indicate a lower probability of this being ALS? No.Do my frequent eye-lid twitches indicate a lower probability of it being ALS (and higher chance this is due to anxiety or a benign cause)? No.All that I had planned to ask went out of the window once I was actually there but I assume he found no weakness or abnormal, other than brisk, reflexes as he only carried out each part of the test once (common sense suggests if you get something anomalous you would repeat it?).So a 10% chance of a first class letter not arriving the next day seems like a very low number. A 10% chance of ALS seems like a very big one and has really shaken me up. Especially with a long wait for an EMG.Thoughts (reassuring or otherwise) are welcome.GlowGreen
 
A sudden onset of widespread twitching with lack of weakness is not indicative of MND. I don't know where that guy dug that 10% number out. Besides that fact, ALS twitches like your forehead do not suddenly disappear. A nerve does not stop dying .
 
See, this happens quite a lot when people visit normal neurologists. Those are persons that are treating people with headaches, entrapment syndromes, parkinsons, brain tumors, epilepsia and , well, just ALL neurological conditions. So it is not astonihing that they do not know too much about fasciculations, it is only a very small part of their field of interest. As soon as people see neuromuscular specialists, they are more or less kicked out of the practice because those docs can tell right from the start that it is not ALS from their experience. 10% is a hilarious number. The most common citation of neuros on here is: I have never seen a case of ALS that first presented wirh widespread twitching. And never is a bit of a difference to 10%.
 
Since you are only 10% scared and 30% unhappy, take the other 60% and focus on letting go of that fear, stress, and worry. Our modern medicine might as well be in the stone ages as far as I'm concerned. For all our technology and advances our doctors still just guess and throw pills at us. They don't cure anything, they just cover it up. Consider going alternative medicine my friend.
 
Hi GlowGreen, I can understand your worry, i have every symptom i read on this board in just a short time of 5 months. Maybe my story will ease your mind or make you want to sort out better medical advice..so far i have been seen by 3 different neurologist, a team of neurologist whilst in hosptial for my symptoms and i have had every blood test most dr's will order, a mri of spine which showed abnormalities, a mri of the brain which showed abnormalities, and a emg which showed chronic denervation in all my muslces tested, yet my neurologists rule out ALS even with my emg findings because of my clinical exam being fine each time they check me. Twithcing is definitely not something they will diagnose ALS off from my experience, you have to have some clear weakness and a very conclusive als type dirty emg reading before they will go near a diagnoses. So keep your spirits high and be happy that it was twitches you woke up with and not weakness or paralized limbs or severe bulbar issues because that to my experience would warrant more concern than twitching as far as ALS is concerned, i hope this helps and i hope you seek better medical advice...putting percentages on diagnosises without exams and emg's etc sounds like he is playing dr and not being one. Anyone else feel the same?
 
Ok, first of all, sounds like you unfortunately got stuck with a rotten neurologist. I'm no expert, but widespread twitching is NOT less indicative of ALS?! Surely he jests. That is wrong. Full stop. Incorrect information.I have been lucky with the general neurologists I've seen, as they do seem to have perhaps more experience with the disease than many. That being said, I, like another poster, recently went to see a neuro muscular disease specialist, as previous reassurances just weren't working. What the other poster said was right - they are so experienced and specialized, they can often spot a case as soon as you walk in the door, shake their hand, and speak to them.I feel for you because I think a totally, totally unnecessary amount of fear has been put in your head by someone who sounds to have barely even considered your situation. And now being faced with a wait for an EMG? That sucks. I don't know upon what this guy was basing his 10% estimate, but with widespread twitching and no other symptoms, I believe he meant to have said -10%!Please try not to worry until your EMG. I'm certain you're fine.
 
Don't automatically consider someone an 'expert' until they've earned it in your eyes. Do you know what they call the guy who passes with the lowest grade in Medical School??? They call him 'Doctor'! :)
 
Thanks S.A.M and Bill for your replies. Where I had previously been rational (and would have taken a lot of comfort from the points you make) I am now not doing so well.My right calf is going absolutely crazy with fasciculations in multiple locations almost continuously (although the upper-body seems calmer). I am clinging to the idea that it would be 'possible but v.unlikely' (never say never) after this period of time and with no weakness etc that this is sinister.I think my remaining 60% is now barely controllable anxiety :(Thanks again for the replies though.GlowGreen
 
Our culture today tends to over-emphasize the rational and logical side of our thinking while either ignoring or disregarding the emotional side as inconsequential or a nuisance. There is actually quite a bit of credible work showing the repeatable relationship between emotional patterns and disease (dis-ease). My wife and I just got a book off Amazon called 'Heal Your Body' by Louise L. Hay where she lists the emotional relationships tied to certain organs, issues with organs, or diseases in general. She also lists affirmations that you can say on a daily basis to change that emotional pattern and therefore remove a potential root cause (if it was an emotionally rooted problem to begin with). I know this sounds foreign or just plain crazy to most people, as I used to be one of them. The things I have experienced first hand in the last few years though have changed my perspective and I'd invite anyone with an open mind to not be so quick to rule out the power we have over our own lives without most of us ever realizing it. I will give an example. For Anxiety the probable cause listed says 'Not trusting the flow and the process of life'. The new recommended thought pattern she recommends is 'I love and approve of myself and I trust the process of life. I am safe.'Under Tics/Twitches the probable cause listed says 'Fear. A feeling of being watched by others'. The new recommended thought pattern is 'I am approved of by all of life. All is well. I am safe.' (I think this may be more geared toward Tourettes though which is common for people who were abused)Here are some more..Problem - Probable Cause - New Recommended Thought PatternNervousness - Rear, anxiety, struggle, rushing. Not trusting the process of life. - I am on an endless journey through eternity and there is plenty of time. I communicate with my heart. All is well.Numbness - Withholding love and consideration. Going dead mentally. - I share my feelings and my love. I respond to love in everyone.Spasms - Tightening our thoughts through fear. - I release, I relax, and I let go. I am safe in life.There are quite a list of things to look through. I know this sounds out there. I have to admit though, I had a stubbed big toe from way back in 2009 that occasionally bothers me from time to time. Well, it had been acting up recently a lot, just kind of dull aching. I looked up what she had listed for the toes. Toes - Represent the minor details of the future. - All details take care of themselves.I realized I had been really focusing a lot lately on details for things going on in my job that are ramping up. I have been trying to work out the details for the future and maybe have been going back to some of my old ways of over analyzing and doing some minor worrying. Nothing too bad. It was interesting when I started to consider this seemed to coincide with my big toe bugging me again. I started focusing on letting go of some of this over analyzing in my meditations and I reassured myself that I can trust in the process of life to unfold as it does where all will be well. The next day my toe felt considerably better, after having bugged me for a few weeks. Am I saying that saying affirmations like this can solve all your problems? No. It can't hurt though! What if emotional patterns are more to blame than most of us realize? What if they are a big piece of the puzzle? If emotional patterns didn't matter at all we wouldn't have so much evidence of stress relating back to diseases. There is a relationship. All I recommend is that you look into it further. Logic be damned, there is a part of you that does not care what is logical. It only cares about how you feel, which directly ties back to your overall well-being.
 
GlowGreen...If that Doctors response was true we would lose 10% of our elite teams membership...Don't worry, you will run into an idiot every day lol
 
@S.A.M Thanks for that, it's interesting. I think you are more open-minded than I am (and I mean that as a compliment) but I am prepared to accept a a strong connection between mind and (twitching) body.@juliette Yes, a reassuring point!! I've today confirmed that my neuro exam etc was all entirely normal so the 10% figure does seem to be based purely on the fasciculations (which are in many muscle groups as they have been from the first few days).
 

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