Update on Message: EMG, MRI, CT Scan

Highlights Only
Thanks for all teh responses and support guys.I went do a CT Scan on Tuesday night, now I am awaiting for these results and for my MRI as well. My neuro seems to be quite good, she is the head of teh department in the institute of neurology of Montreal and she does specialize in ALS cases. She seems to think that there is something wrong with me other than BFS and she said that she will try hard to get to the bottom of this. For the moment she prescribed me to take Paxil (it seems to be an anti-depressent drug) ... I am not sure about this as I read the side effects and there seem to be many of them and some seem to be quite extreme. Has anyone, or is anyone taking these pills and if so what are your thoughts and have you noticed any differences in regards to your anxiety, attitude or any side effects.Other question, has anyone ever experienced twitching and jerks in one hand for several days, then both hands (left hand mostly twitches and jerks with the index and thumb, and right hand mostly the ring finger). I have been having this non-stop for about 6-7 consecutive days. In addition to these, I have now started to have big jerks and twitches in the back of my right thigh. My thigh and my hands seem to be very much in pain as well, its very unpleaseant and uncomfortable. I wish they would just go away and let me work and do my regular activities. I dont know what to think and do ... its just making me go crazy. Thanks for your help and time again.Will
 
Will, as for tongue fasciculations, I can see why she is worried as an ALS specialist but people here have had it (I have had them too). Depends on the severity, whether unilateral or bilateral etc. Occassional tongue twitching might be vieweved differently than constant, non stop fasciculations over its surface. She hopes to see a moprhologic issue in your CT/MRI - that could explain this as a local process. I'm sorry she told you she could not rule out ALS after so long and last clean EMG, yet I would say many neurologist in Europe have the same approach if they were able to see your tongue fasciculations. Mine started 2,5 years ago and my tongue is still fine.
 
Will,When you say "she seems to think", did she tell you that or was that your interpretation? I have everything you describe including daily bilateral tongue fasciculations. My forearm and hands twitch very frequently throughout the day. I've been to the best neuros and they say BFS. So I don't see how your story is any different than mine.-Matt
 
Thanks Matt for your response. She told me ''there is something wrong with you and because of your toungue fasiculations I can tell you that it doesnt look like its BFS''Matt, how long have all these things been going on with you? Twitches, toungue twitches, etc.? It has been alomost a year for me and I feel like I am going crazy ... I just wish that I could get my old life back, I mean I was happy, healthy and a fun guy, now honnestly I dont feel like doing anything anymore other... I just wish that there was something I could do to get better ... and like I said, I am afraid to start taking that drug because I dont want to become dependant or anything.
 
Will, what is the nature your tongue fasciculations? Btw tongue fasciculations, along with bodywide ones and myokymias are present in autoimmune disorders like Isaacs.
 
Saint, what do you mean by what is the nature of my toungue fasiculations? I have them 24/7 - when I keep my toungue at rest in my mouth or when I stick it out. My toungue ''quivers'' its like if I have small waves on my toungue (bag of worms) ... I dont feel my toungue fasiculations, its just that when I look in the mirror I see them or when I go see doctors they see it.is that what you meant? Any thoughts on what I described? Thanks
 
Yes, I meant the description. Did they do the EMG of your tongue (under the chin usually)? It would be very strange for such a symptom - no matter the cause - to have no signs on EMG. Isaacs produces typical discharges but they would detect them in other regions as well. And I guess are not off a medication - your neuro would consider that for sure.
 
Saint - no they didnt do an EMG of my toungue, she actually said that she never stuck a needle in anyones toungue before. The EMG I did last week seemed normal and she said that there wasnt much change since the one I had done in April either. Sorry I am not sure what you meant by the following ''It would be very strange for such a symptom - no matter the cause - to have no signs on EMG. Isaacs produces typical discharges but they would detect them in other regions as well. And I guess are not off a medication - your neuro would consider that for sure.''Thanks again
 
Will, this is kinda strange - she is an ALS specialist and she never actually did an EMG of the tongue? That is the basic thing to do if a person has tongue fasciculations because this will pick up the problems and enables to investigate their nature. How would she confirm involvement of bulbar area electrophysiologically in their patients?My second point was that such a constant fasciculations in tongue definitely needs an attention and EMG would be extremely helpful in revealing the cause - no matter what the cause is. These tongue ones are sometimes linked to a withdrawl of certain medication but I'm sure you were asked by your neuro about meds etc. I would mention to her the issues with phelgm clearing.She also said "there wast much change since the one" - so there was a change on your EMG? I would need to know exact results (degree of spontanneous activity, MUPs recordings...) to tell you more. But that is her job anyway, I work only with neural tissues, not living patients.
 
When I went out to the Mayo Clinic, I told them about my tongue twitches and showed them during my visit. They told me it was not necessary to to an EMG of my tongue because if it were something sinister involving my bulbar region, there would be abnormalities in my limbs as well. So they said, "We're going to test your limbs and if we see anything that leads us to your tongue, we'll do it but testing your tongue isn't in the plan right now."
 
Matt, it was most likely because your body was showing more fasciculations than the bulbar region. With widespread fasciculations affecting the tongue one would expect widespread involvement (in case of MND) but remember that bulbar region is not linked to the spinal one - one can have pure bulbar involvement or pure spinal, which is quite common with in bulbar ALS - people have speak difficulties, swallowing issues and dirty tongue EMG, yet the rest of the body is OK..yet.
 
OK, so if someone had ONLY tongue twitching, then maybe it would make sense to EMG the tongue. Not saying its ALS but that would warrant testing of the tongue (the Mayo Clinic did tell me this). But Will has bodywide fascics too and a clean EMG of the limbs.
 
Yes its true I have the following since March 2012, twitching in legs, arms, butt cheeks, shoulder bladesIn addition to the symptoms above, I have develloped new symptoms since about August 2012 such as toungue twitching, eyelids twitching, buzzing feeling in chin, jaw pain on one side (left), twitches in both hands and fingers jerking, spitting up excessive phlegm, dry mouth, deep cough and spitting out lots of green mucus (especially in the morning), constant feeling iof having something stuck in my throat and trying to clear it out (went to see ORL, did a test where they send a video cam down your nose to see your throat and he said that everything seemed fine).I do have pain at times, like today where the back of my quads wont stop twitching ... my legs feel tired and worn out ...I dont know why my neuro didnt and doesnt do EMG's of teh toungue. She does want to redo one in April (3 months follow-up) to see if any changes. @Twitchy doc - I actually didnt get my report from her so I cannot give you the details (degree of spontanneous activity, MUPs recordings...) but she said that the nerve and muscle conductions seemed good and that there werent any developments since my last EMG done in April 2012. She said that it could be some other diseases such as Kennedy's or others ... I really dont know and well I am quite worried as well because mostly because of my toungue and as I said before I am getting more and more twitches and at different places and having constant ''hot-spots'' for days and days non-stop.Also, anyone have any comments to my question regarding Paxil drugs? Thanks again guys and girls
 
Will, she told you it can be Kennedy? Kennedy's disease is a motor neuron disease (benign when compared with ALS, rarely shortens life span) but there is mainly bulbar involvement and EMG and blood test are absolutely necessary to diagnose it.As for EMG, conduction velocities etc. that is the first part of EMG, the needle part results are what matters.Anyway keep us informed, I hope for the best. I will tell what I have been told - time is on your side!
 

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