Caught in Between: Twitching, Burning, Tingling

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sanjay

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I am caught (in my mind) somewhere in between these 3 conditions................can anyone relate? Below items occur in both legs / feet equally...........no where else.......I have twitching , burning, tingling, like BFS and RLS. However, RLS is only supposed to happen at night? Mine is 24/7.I sometimes have a sharp "nerve" type pain that "stabs" me in my toes / feet............? neuropathy.I have only pain and freak sensations....no numbness....................no weakness.............I am healthy, no diabetes, no back issues............normal blood work......Could I have some strange combo deal going on? Is this all BFS? Even the nerve pain?HELP..........can anyone relate.Thanks in advanceJanet
 
Boy, this sounds like me. I was just going over in my head if this BFS isn't some kind of neuropathy. I also get a stabbing feeling in my feet. I really think somehow it's related but don't ask me how as I get no answers from my neurologist.
 
Hey Janet,Welcome to the fray. I can tell you a little about peripheral neuropathy, since I have it (borderline) found on NCV in both sural nerves (the sensory nerve that runs down the back of your calf.) Basically, when they take a safety pin and poke there is a noticeable difference in less sharpness from my ankles to just below the knee. I still feel it, but it is less sensitive. Every once in awhile I will have burning type sensations running along the backs of my calves, same area. Sometimes the toes on my left foot esp. go numb, that comes and goes.The rest of the stuff you mention sounds very BFS'y. New word. :D)
 
Been wondering this stuff myself. Have had weird sensations and lessened sensations in my left foot for months. Sorta tingles at night too, like it's worn out. My 4th and 3rd toes were almost numb earlier in the summer, but that seems better. Now my big toe feels like it's numb inside (I know that sounds weird.) My GP said maybe a bit of peripheral neuropathy, but not anything he was really worried about. I just don't want it to spread...My emg 3.5 years ago was fine. But i was really just twitching then with a bit of tingling.Is neuropathy a bad thing and will it get worse?I have a friend who has RLS but she just pops one of those pills every night to help her sleep and doesn't worry about it.
 
Twitching and tingling are symptoms of neuropathy. I had the slow sensory nerve conduction findings (evidence of neuropathy) on a third NCV test days after a second that found everything to be normal that was preceded by an initial one a few months earlier that found everything to be normal. At a recent neuro appointment, I thought redoing the NCV test would be a good idea through my HMO (since it would be free) but the HMO did not want to pay. I asked the neuromuscular specialist I see who found the abnormalities whether I should appeal the denial to get another NCV test. I said I still wondered about the results since they went from normal to severely abnormal in days. He said he would not give much weight to another labs tests and he said you get inconsistent findings all the time because so many things effect the test. He said exercise before the test even effects it. Anyway, this just made me feel like neuropathy is more of a clinical diagnosis too and that if you feel lots of nerve pain and discomfort you could easily have it. A lot of people who are diagnosed with neuropathy do not have nerve biopsies proving something is wrong with the nerves because the nerve biopsies cause more permanent pain. Having neuropathy is in my mind like being prone to headaches or having sensitive skin. It can be really mild and just something people live with or mention to the doctor in passing. As you age it can get a little worse and if it gets really bad there are great meds for it. I know a lot of people seem to fear the word neuropathy being attached to them but it really isn't that scary since it is so common and can be so mild and not that progressive. It is especially not scary when compared to the thousand other things a person can have.Krackersones
 
Barbie--Actually, the neuro I last saw was at an MND clinic. She noted the sural nerve slowed conduction, but this is something I already knew about. Mine is most likely due to an autoimmune vasculitis of the very small vessels that feed that nerve. I have lots of autoimmune crap in my family. My blood tests are negative for most autoimmune things, except I had anticardiolipin antibodies show up as positive (I take aspirin for this) and once my ANA was MILDLY elevated (only 80). The fact that my lower legs are sort of numb doesn't bother me much. Nothing I would want to take meds for. I make sure I wear shoes outside and take good care of cuts if I get them. Much like a diabetic. The PN can get worse, but hasn't for me in 6 years. I just keep an eye on it. She did not say the twitches were due to the neuropathy, although they certainly can be a symptom of that. But for me, since early January, I have bodywide twitches. I think the 2 things are mutually exclusive.She also did not say BFS. She said, "you don't have a neuromuscular disease and you need to work on getting your anxiety in check." Neuros at MND clinics are straight and to the point. :LOL:
 
momof2,Where do you get the idea that neuropathy and bodywide twitching are mutually exclusive? I have seen three neuros since being told I had a type of neuropathy (and they all know I have bodywide twitching) and they have never said anything of the sort. In fact, I have read how the peripheral nerves are all over the body (head to toe) and read about polyneuropathy which is bodywide.Krackersones
 
JRO--I think the 2 things are mutually exclusive for ME.I've had the PN in my sural nerves for at least 6 years. No twitching problems, just all sensory, like burning and decreased sensation with the pin *beep*.I've never been diagnosed with polyneuropathy. My emg/ncv was okey-dokey except for that sural nerve part. Nope, my body-wide twitching and electrical zaps and so forth came on in a period of extreme life stress, and after I read up about ALS on the internet after some perceived weakness in my left hand/arm. It's my belief that my continued worry and stress over whether I have a life-threatening disease has perpetuated the ongoing symptoms. Everyone has a different story, that is mine.
 
mumof2,Hi there, what you have just described is exactly the same as i have in my left leg from my knee to my ankle. I am actually quite relieved to hear that someone has the same thing. I have been having problems with weird sensations and twitching for 18 months or more now. I have a MAJOR fear of having MS, unlike most people on this forum who have the **s fear. Can neuropathy be linked to MS? My GP sent me for an MRI last year, there were no signs of MS and he has pretty much ruled it out. Nevertheless i still have the fears. My leg becomes quite numb during the night too, also my feet and toes feel as if they are falling asleep very quickly if i sit in the same position for too long.
 
mumuof2,Is you bodywide twitching just a twitch here or there every day or so? Or is it something that happens multiple times a day everyday and is very visible (you see the muscle or skin moving)? I would very much like to believe these symptoms can be caused by stress since mine came on too after a period of stress. I tend to think this is possible if the twitching is very minor and hardly noticeable. I had nerve burning pains in my feet and nerve tingling in my legs too for years before the twitching started. I just thought I wore bad shoes or stood on my feet too long as a teacher. I now think this stuff could have been early stages of what I have going on currently. I get very confused by all the neuro tests after having three clean EMGs and two clean NCV tests followed by a bad one. It just makes me wonder about this stuff being so black and white. I get my reassurance mainly from the fact that I am very strong physically and actually stronger than I was 14 months before this all started because I finally started to exercise and lift weights regularly.Krackersones
 
Zster1--I would say a negative MRI means no MS since that is the new gold standard. You could ask your GP for a referral to a neuro, who may want to do an EMG to see if you have true peripheral neuropathy. Your issues sound sensory. Some neuropathies are small fiber and won't show up on an EMG right away.JRO--that may indeed be why your first EMG's were negative--small fiber neuropathy can cause lots of burning and numbness but not show up on testing. Eventually, it usually does because it moves into the bigger sensory nerves. Being strong physically is the most important thing, and focusing on the positives in your life. I have learned in the last few months that endless searching for answers not only causes more stress, but the answers you seek may never come. The medical community is rarely black and white when it comes to nervous system/autoimmune issues.To answer your question about twitching--I get brief twitches throughout the day. Sometimes it is one twitch in the bicep, several fast ones behind the knee, or on the instep of my foot. I have had them on my back and stomach, hands, lips, and my current hotspot that won't go away--my tongue. At night when I am going to sleep or waking up, I get those annoying jolt-like twitches like someone touched me with a cattle prod. Zap, then gone. The ones on my left hand have been the finer ones, the ones I can see, but not feel. Yet my strength in that hand is good on clincial exam. I have been freaked out about that hand, thanks to Dr. Google, so I have felt perceived weakness there. My neuro assures me that is my over-anxious mind playing its tricks. Same with my tongue. I do believe stress brought this on, and continues to feed it. Manage the stress, and I think we will both see improvements.
 
I also have allot of shooting pains and weird aches from time to time. Take a look on this : If your muscles can twitch for no reason.. then your sensory nerves can also shoot false signals ;)
 
momof2,Thanks for your thoughtful response. I am trying to move more towards excepting the lack of answers and just doing what I can to live the best life I can in the present and doing whatever is accessible to just feel better. I am even thinking of going an entire year without seeing another doctor starting in October as long as my symptoms do not change significantly. I'm sort of a goal oriented person so maybe this will help me.Krackersones
 
What is RLS (excuse me because I don't go googling anymore)So far as neuropathy is concerned, neuropathy R us.I think in my case it is co-incidental to BFS, because I think BFS has existed the longer.I had operations that were supposed to correct the problems with my hands, well I still wake up with dead hands, it is a fugitive problem I think, because it may have started in my wrist and elbows, but it now is higher up in my neck. Now this is the interesting thing, no neuro told me that, some time ago a physio told me that never mind the NCV tests that nothing would improve because the problem was not where the specialist said but in my neck. Well surprise surprise the MRI scan has caught up on the physio at last and says that I have a problem in my neck.Well at least it can't go any higher than that :)I am really cynical these days about what MRI's and other tests can reveal. Yes don't get me wrong, if you don't have a nasty EMG then you do not have ALS, MS or anything like that, but this much is sure I think that science is behind pragmatics and experience as to where problems lie, and I now have a lot of respect for the humble physiotherapist.
 

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