Discussions By Condition: Nerve conditions

Be gone twitching!! - what else can I look at to help with a Dx?

Posted In: Nerve conditions 5 Replies
  • Posted By: crazydaisylu
  • January 29, 2007
  • 07:04 AM

I've recently begun twitching randomly and having weakness. I'd like to fix this but my symptoms aren't fitting into categories for the docs and I need some new ways of looking at this. Up for the challenge?

Ok, starting about 2.5 months ago, I started twitching. I think it's twitching - the medical community and I seem to be unclear as far as which word to use when. It's a brief muscle contraction (not unlike the beginning of a nerve conductivity test) that targets one muscle at a time. Ten seconds, a minute (or few) later it may be elsewhere, but for the moment, it's just once and I can see the area clearly move. It occurs in my legs, feet, hands, arms, neck, jaw and lower lip. Only once or twice has it gone to my hip and one time to the rib cage area. There is no pain or strange sensations. Other than the fact that I didn't request movement. I can still voluntarily control/move it and there is no itching, burning, fluttering, pain... you get the idea. I am more aware of it when I lay down to sleep, in bed before I get up in the morning, sit at my computer chair... but it also happens occasionally at work when I'm busy. This is the main issue but there's a bit more. There's been some hand numbness/tingling for over a year and a half that I never did anything about - I just thought I was cold or something, and loss of sensation in my lower legs. Again, I had no idea. I think we've determined there is some sort of neuropathy (possibly Idiopathic Peripheral Neuropathy as I don't meet other criteria) but that's where any real diagnoses end. The other issue that came along at the same time of the uncontrolled movement/twiching was generalized weakness and a feeling like I was just going to 'drop' (perhaps like passing out {?}, which I don't know because I've never passed out but it's the best way I can explain it). In addition, there are times I'm holding something and look down only to see it slipping from my hand. Just for fun, when I'm holding something lightly, like a piece of paper, my hand crunches down in a jerky, tightening twitch. Again, only once.

All I want is to identify it so I can get rid of the symptoms. But my doc has come up with Restless Leg Syndrome and/or Benign Fasciculation Syndrome. Enlighten me, if you can. I really would be grateful. See, here's the problem I have with that. For the RLS, I have absolutely NO burning, crawling sensations and nothing improves with movement. I do not feel compelled to get up to relieve it. Aren't those the main signs? Plus, would that cause weakness in my hands and twitching in my lower lip? Next is BFS. Everything I've read remarks on how it's more like a repetative, fluttery tic (think by your eye) which this is nothing like that. It's once in one area then it moves on and it's stronger.

I'd be happy if I just felt comfortable with being able to match most of my symptoms OR to exclude something because I don't have the telltale signs. Instead I was given a prescription for $400 for something that hasn't really been diagnosed. My labs came back basically normal with the exception of the Ferretin which was low; all other iron and anemia-related levels are normal. I eat very little meat so that may be the reason for that low level. Healthwise, I was diagnosed as Bipolar just about 5 years ago and that is managed nicely with Lithium. Vertigo is another thing I've lived with for years but the source has never been pinpointed; no meds for that, I just wobble occasionally and walk into a whole lot of doorways. =) Everyone has their idiosyncrasies and such, but I'm basically a healthy (er, mostly) 36 year old female and I don't drink or smoke.

I do not want a 'big' diagnosis, I just want to feel comfortable that the meds (Lyrica) prescribed to me are appropriate. I don't want to just mask something, I want to have it properly named so I can kick it's butt. Personally, I don't think I'm matching those diagnoses but if any of you lovely people out there can throw some knowledge, possibilities, or stories of experience my way, I would truly be grateful.

Thanks for your time - I hope you all find the info you're looking for out there.

Be well.

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5 Replies:

  • Lots more good information about Benign Fasciculation Syndrome is posted here: www.AboutBFS.com Hope this helps!
    Anonymous 42789 Replies Flag this Response
  • Thanks so much! I was reading a bit on that site and part of it does sound like what is going on with me. It just seems like a couple of things hit at once. Isn't that always the way? =) I'll check out the site from time to time for updates. Take care!
    crazydaisylu 23 Replies Flag this Response
  • Good luck! For those who are interested, I've compiled a few more BFS resources here: www.bfs.good-health-guide.net Hope this helps! :)
    Anonymous 42789 Replies Flag this Response
  • HI CRAZYDAISYLU,I have just had a read of the BSF site and thought this was worth noting for you"A simple clinical rule is that fasciculations in relaxed muscle are never indicative of motor system disease unless there is an associated weakness, atrophy, or reflex change."Have you had mri's done of your spine and brain. Might be something to consider if there is any further change or additional symptoms.The Nervous system is such a complex system and so many conditions have the same symptoms but it is the combination of symptoms that are important.All the bestLouise:)
    kimberleydust 15 Replies Flag this Response
  • Metta - Wonderful, I'll be taking a look at that tomorrow. Thanks for forwarding this information, it is much appreciated. Louise - That's the interesting part about it - there is weakness but it may be attributed to peripheral neuropathy, so in that case it may not count, right? (That's what I'm hoping...) You're right, it is a complex system and it takes time to sift through symptoms. The hard part is dealing with the symptom changes on a daily basis. Suppose this is where patience comes in? So far just an EMG, no MRIs. Personally, I'm hoping it's just a vitamin/mineral deficiency or something. Still checking into all this info - and a new doc appt this week. =) Thanks for taking the time to share your knowledge!
    crazydaisylu 23 Replies Flag this Response
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