Newbie's Aches and Twinges

[Rainbowdash12]

Hi. Newbie here with nothing like new stories I'm sure. My sorry tale:- Tennis elbow like pain since Nov 07, followed by shoulder pain in same arm- Awareness of other aches and twinges in other limbs = sudden and immediate fear of MS (Mar 08)- Google stupidity brings on massive anxiety over MS and then **s (Apr 08)- Pattern continues for a bit with ups and downs, new symptoms appear (twitching) make appointment to see neurosurgeon- Have spinal MRI (because of neck aches) and brief (I thought it was) EMG and Nerve test. Neurosurgeon says all ok- I worry that spinal MRI not enough to rule out MS and that EMG too quick. Also twitching in calves now off the scale- See Neurologist. We talk about BFS. I also ask about twitching being the last thing to present in **s. He says no, it's the first. I go into anxiety overdrive.- Have brain MRI and blood test to check CKAm now waiting to see him again on Friday to review these. In terrible state though. So scared. Twitching lots, thighs ache, forearms ache. Keep getting weird nerve pains in either hip which seem to pass down legs. Appetite gone (am big eater usually!) and diarrhoea for last week.Am 33 yr old male with wife and two kids. Job has been exceptionally stressful this year. Part of me knows the above could be tennis elbow from work (and too much Guitar Hero!), Sciatica for legs in too much sitting down and then stress/anxiety casuing BFS. But the dark part of my mind overrides all of that and is making life a misery. Have been sobbing this week like mad.Appreciate any and all comments. Best wishes to you all....

 

[NinaC2005]

Hi 11--Despite what your neuro said, nearly every other person here--who has been to a neurologist--has been told that twitching is rarely, if ever, the presenting symptom of ALS. My neuro said specifically that ALS is a disease of weakness, not twitching. When I was new at this (twitching, that is) I blundered onto the Cleveland Clinic's medical advice site (or whatever it's called). There, the neuro's told anxious correspondents that "it's the company twitches keep" that concerns them for ALS--clinical weakness and muscle atrophy. You don't have either one; likewise, my doctor (and those of others here) have said that pain is NOT an early symptom of ALS. But more importantly, if you did have ALS--and you don't--the EMG would have detected it. If the twitching and other crap was due to ALS, that obviously means that the disease is present--the EMG would pick that up, even in asymptomatic limbs.It sounds like you have a mix of neck/shoulder/back problems of a more "routine"--though painful and potentially serious--nature than something like ALS or MS. I have lower back problems and the stories I could tell. . . sound like some of yours!Your neuro is misinformed or misspoke; too many here have reported the opposite about twitches and presenting ALS, the literature supports that prevailing view and, in the raaaaaaaaare event it was, your exam would have picked something up--weakness, atrophy and signs on the EMG. In fact, when the handul of cases of "presenting twitches" is truly examined, it turned out the patients did indeed have other clinical signs. The clean EMG as well means that you're OK.Hope all this blows over for you after your visit.But you're OK.Best regards,Mark

 

[Rainbowdash12]

Thanks for that Mark. Still worried about the EMG though (like I'm an expert!!!?) but he just pinged two separate needles in right arm and right calf for a few seconds and then asked me to move my legs gently (which caused the machine to make lots of 'static' noise). It was all over in under 5 mins. I've read that it takes 2-5 mins for each needle test and am obsessed that it was not thorough enough and would not have picked anything up. Also I wasn't twitching in my calves then really. That's picked up dramatically since then (they're both popping like mad now!)One other thing I forgot to add. Sometimes when I look down at my calves and they're not twitching I get wound up and punch them a few times to make them twitch (which they do). I think I'm turning into a psycho. I also can't tense my right calf like I can my left and am sure it is not as big/defined. Then again, I can't raise my right eyebrow like I can my left! Maybe that's just the stronger side of my brain!Oh - and you mentioned asymptomatic. I saw he wrote on my notes 'polysymptomatic'. What's the difference?

 

[Nero]

Hi there. You don't have ALS. It is doubtful you have MS either. How can I reassure you?First thing to do is to get a grip with regard to the Googleitis. I did that to myself when I looked up "twitches". I convinced myself that I had ALS and was doomed to decline into a frozen hell with a respirator > grave. Well, 16 months later, that hasn't happened. I can still walk just fine, have no muscle atrophy or anything else. I do have twitches and cramping. I have some pins and needles and burning. I also have tinnitus and the occasional eardrum fasciculation (I'm not the only one). However, much of this has reduced -- at least it appears that way. In reality, I think I have "adapted" to the symptoms. I honestly think that your bowel symptoms are due to anxiety. I had bowel symptoms at the beginning of my neurological mess and then convinced myself that I had colon cancer. I don't. My neuro was correct in that much of my symtoms are/were caused by "patient anxiety", but NOT ALL. I suggest the following:*Relax*Get a second opinion from another neurologist*See an immunologist*Cut down on caffiene intake (one cup of coffee per day)*No energy drinks*Take a good B12 vitamin*Eat plenty of fruits and vegetables*Get eight hours of sleep every night*Relax*Be thankful you are alive and be thankful you have a wife and children -- you are very, very lucky -- cherish them*Relax*Stop self-diagnosing -- get control of the Googleitis*Relax*Eat some bulking foods like bananas, longhorn cheese, peanut butter, good quality bread -- for a couple of weeks -- this will help with the digestive symptoms and bring them under control*Meditate 10 minutes per day*Do some stretching exercises -- but don't do anything to taxing for a couple of months*RelaxYou follow me?The fasciculations are annoying. By the way, yes, it is easy to kick off the twitches by punching the muscles. I used to do that. Think back to when this might have started? Were you near anybody with the chickenpox, shingles, influenza. Perhaps lyme disease exposure? Were you given an imaging test (CT-Scan or MRI) using a contrast media? More than likely, you have a post viral syndrome or BFS. Either way, they are not fatal. Just get that second opinion from another neuro.I'm here to help. If you need to talk, please post.Z

 

[Nero]

Hi again:One more thing. The fasciculations would typically present in one limb with weakness and then spread. (Also, ALS fasciculations are typically "fine" fasciculations and representative of large motor neuron disconnection from the muscle fibres.) Specifically, weakness in that your leg would give out, or you wouldn't be able to pick up something like a pencil, let alone a tennis racket. Further, you would have difficulty buttoning a shirt or pulling on a pair of slacks. Bulbar ALS also presents with "bulbar onset" in that your voice becomes nasal and you have difficulty swallowing. Then you start to drool as you can't swallow your saliva. I doubt this has happened to you either. Don't confuse "globus hystericus", a choking sensation from anxiety, with bulbar onset ALS. What you're showing, with a NORMAL EMG, is not ALS. Further, you're in the upper age range for MS and it is doubtful you would be showing symptoms of MS at 33 years old. Further, I assume you've had a brain MRI that was clear with no MS lesions. 33 is young for this level of anxiety. Can you turn it around? Learn to love your wife and children. Again, be thankful for each day you have them, that you are alive and are employed. Sending calming thoughts,Z

 

[Rainbowdash12]

Many thanks. I am due to see my Neuro on Friday to review brain MRI and blood test for CK. Seems a-g-e-s away....I am taking Magnesium supplements and am going to look for Cocoa Nibs as I've heard these are good for the nervous system and energy. Should I take B12 as well? I always worry about taking loads of stuff without checking with the doc.Can I ask if you get fatigue in your muscles? My forearms/wrists and thighs have been feeling very tired the last few days - but I am still able to do everything as usual (and yes I have been doing stupid 'strength tests' like lifting the baby while he's still in his high chair!)Keep thinking about joining the gym and pushing myself to the max but I understand this is counter productive. Will try doing some basic stretching as you say and keep on walking as much as possible (although I analyse myself constantly when I walk as my legs 'feel' a bit different)

 

[Kristin369]

Your symptoms and fears are so similar to mine. I have tried many of the things that were mentioned by a previous poster -- cut down on caffeine,magnesium/calcium supplements, electrolyte drinks, calming self-talk, etc. I, too, had an EMG when my calves weren't twitching as crazily as they are now. I just try to push things out of my mind and enjoy NOW -- be in the moment -- and try to alleviate my anxiety. I figure if it is ALS,(which I preay to God it isn't and try to convince myself it's not with every twitch I feel) what would I be doing differently? There's not any surgery or medicine I could take to make it better, so I should enjoy my body in the healthy, able to move, state it is in now. I also take .25 mg of xanax right as I am going to bed and that helps me sleep without waking up from the fasciculations. Don't underestimate the importance of sleep -- especially now when it seems you are recovering from a very stress inducing year. I, too, wake up with very tired forearm and calves which I believe is from my muscles contracting and being stimulated all night by the fasciculations. All the best....try to relax, I know it's hard because believe me, I've been there! Worry, bowel upset, lump in throat, crying, etc. and it all was reduced by finally gettingmy anxiety under control.