1 Year of Twitching: Need Advice

[bettyboop1994]

Hi-- I'm new to this site, but have noticed twitching for about 1 year, since May 2010. I would describe my twitching as sporadic hits throughout several muscles groups-- pretty much all over, including face and tongue. The neurologist that I am currently seeing is the director of one of the MDA clinics in my area. I have been to many doctors, including two neuromuscular specialists who have both told me that this twitching is benign. I feel that I have weakness because my back and shoulders have been hurting considerably when trying to hold them up for a full day at work. So, I guess that this is where I belong for now-- my fiance is getting pretty tired of me talking about my various aches and pains. I will also add that I am seeing a psychiatrist because my current doctor said that I need to get my anxiety under control and probably believes that I'm making up a lot of my symptoms. I'm not really one to make things up, but did go-- he talked to me for about an hour and put me on klonopin-- no help really where the twitching is concerned. My question is actually regarding EMGs and their accuracy. I am having a very difficult time trusting my doctors and that they have done a complete exam, pulling from the right muscles. Let me say that I have had three EMG's done. The first was when the twitching started in May 2010 on left leg and arm. The second was done four months later on right leg and right arm. The third was done, again at my request, this past May 2011, again on my left leg and arm and he also pulled from cervical paraspinal and lumbro-sacral paraspinals. I dislike that I have to choose a side to be done-- but i think this might be for insurance purposes and also because my doctor cannot discern clinical weakness anywhere, so he probably believes that one side should be enough. I specifically wish that he had pulled from the thoracic paraspinal and cranial muscles-- he insists that if I have the same twitching everywhere that the results would likely be the same everywhere. I guess my question is have others felt this way-- that the right muscles aren't being pulled from? I guess I would like to know if others have dealt with this uncertainty and how they have dealt with it. Thank you in advance for taking the time to respond.

 

[mommyLDN]

Hi and welcome, I will try to help with your question. It is not uncommon practice for a neuro to only test one side of the body. Or..to first or only test the area where the patient is experiencing the most symptoms. For example, since my BFS started the majority of my symptoms and concerns have been in or with my legs ( I do have symptoms in other areas, but my legs were the most troublesome) so my neuro only tested my legs. I remember asking him how many sticks he was going to have to do and he said it depended on what he found (if anything) in my legs. He said if my legs showed no abnormalities then he would be done at that point, but if he found anything he would have to test further or stick other areas. An EMG will show abnormalities even in an area where you are not even symptomatic yet when there is a disease process going on. I have posted on here a few times stating the fact that an EMG can pick up abnormalities up to 2 years before a patient even becomes symptomatic. Therefore, with that being said....if you are symptomatic now and you have a clean EMG then that means that ALS or some other neuro diseases are NOT the cause of your symptoms.I am a bit off today with my own symptoms so I apologize if this was not a great explanation but I wanted to respond to you with something so you werent left hanging for too long with this worry. You have had 3 clean EMGs, you dont have ALS, or really anything for that matter. You are good, I promise, its ok to let this worry go.Take careRobynn )

 

[JoggingCub]

Congrats on your three clean EMGs, Robynn (MommyLondon) succinctly explained the sensitivity of the EMG. My neuro told me it was only necessary to test one side of myself as it would examine all the major nerves as they leave the spine to the limbs. SO that if you had nerve damage it would be picked up on one side, and that anything more of the EMG is only for diagnostic purposes (for ALS dx nerve damage is to be seen in three of the four quadrants of the body). Something like that . . . I've put alot of the neuro visit out of my mind, I think you should too. Sorry that your back and shoulder are bothering you, it probably would not be bilateral if it was ALS.

 

[seadragonsovereign]

I, too, have had three EMG's performed. The first one was very early on in this and I had the same questions as you do/did. It was thorough enough (even had my back and tongue stuck!) and it was "clean", though my NCT test showed some abnormalities related to carpal tunnel in both hands/wrists and picked up a minor issue in an area of my leg where I broke a bone years ago. He, too, thought I was making up some symptoms as they hadn't really burst out yet. So, I got an "upgrade" from that general neurologist to a neuromuscular one and had both the EMG and NCT tests redone (about 6 months after the first one). Same results. I have a follow up visit with him every year and he had me do the EMG/NCT test again. He said he didn't have any suspicions, but just wanted to see if there were any changes. Again, same results though by now my twitching had boomed into the thousands per day. If you got clean EMG's, then don't worry about any of the "big" diseases. BFS is no picnic, of course, but trust in the BENIGN dx. Your shoulder/arms issues are very common to BFSers in that there seems to be exercise intolerance. As an example, my shoulders are sore after a round of golf. I never had soreness before this all started (2 1/2 years ago), so I attribute it to BFS. Similarly, my calves are sore after a jog. And my fingers quiver after I weed eat around the house. It calms down after a while in all cases and there isn't any loss in strength. So try not to worry. Difficult for sure, but it seems like you are heading down the right path.