Seeking Advice: Nocturnal Myoclonus

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bfhopeful2

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Hello all, for all of you that don't know me I have posted some history. Having issues at present and need some advice.I am a 33 year old male. In April of 2009 I had back to back stomache viruses. One week apart to be exact. Shortly after that I started to develope severe nocturnal myclonus. Then about 1 week later I started to twitch in left bicep, it lasted about three days and then dissapeared. The twitching quickly spread throughout my body in a matter of days. When I say it is everywhere I mean it. It waxes and wanes in severity and frequency, but seems to be there all the time to some degree. Now I have always had random muscle twitches since I was a kid, but never anything like this. I saw neuro about 6 weeks later and got the all clear. Had all the tests, I mean everything you can think of. Most important the MRI of brain and EMG/NCV came back perfect. Diagnosis was BFS.In June I was having problems with tingling, tightness and electric shocks in back. Got mri of cervical and lumbar. Cervical showed 4 herniations with cervical stenosis and loss of lordosis (curvature of the cervical). Lumbar came back fine. Said the twitching was not because of this and again diagnosed with BFS.About two weeks ago I had a follow up EMG/NCV this time by a Dr. who specializes in ALS. They found a bilateral root dysfunction in L5/S1 with chronic changes, but no current ongoing changes. Which surprises me because Lumbar MRI came back fine. Again they want to follow up, but say I have nothing to worry about at "this time".So in conclusion I have twitched for about 10 months all over and have the one EMG finding that they beleive is a back issue. The nocturnal myclonus seemed to resolve for the most part on its own. I do not have any real weakness, but I do feel muscle fatigue sometimes off and on when previously I would not have. I have trained Jiu-jitsu/MMA for about 8 years and do teach and compete. Lately I have noticed that I get injured more easily and the injuries take a long time to heal. I have broke ankles, ribs, torn knees etc. and I am always back training within a week. Now I run for a little and have ankle pain when finished. Not the same ankle for all those who are thinking injury .I do have a history of health anxiety and am on medication for it. I do have some other sensory issues from time to time like feeling of spider webs on face and body when there is nothing there, burning sensations in legs, sensation of bugs crawling on legs when there is nothing there etc. With the symptoms I have would you as a rational person put the ALS thing to bed? I have had 5 people, none of which are realted and don't live in the same area diagnosed with ALS in the past 3 years so my anxiety is very high.
 
I think that if you had ALS you would know. It would be very clear, because it's the kind of thing that leaves no room for any doubt. When it begins on a muscle, there is no way back, it will always be worse, and it goes fast. If you have it, you will know it soon, and there is not much you can do about it, except coping with it. So it's really useless to be worried with ALS. Anyway, I don't think you have it, you are moving, all your muscles are working - maybe more tired, but working.Carlos
 
Dude, you have had more testing by more qualified docs than alot of people on here. You have had multiple doctors including an *** specialist tell you that you dont have it... at what point do you believe that they know more about it than you do? I am NOT qualified to give advice, I've been here 5 months now, but you have been CLEARED by people who know what they are doing. As for aches and pains. Did it occur to you that maybe your body is aging and has taken alot of abuse from your lifestyle? You need to keep fighting and teaching arm bars and put this behind you. I don't mean to sound harsh, but sometimes I need to hear it that way myself. I've been in a funk too, lately. Put your faith in GOD and your docs and climb back in the ring :D)
 
When all this twitching stuff started some 22 months ago I was distraught with worry and anxiety. My wifes friends husband who is a top class neuro surgeon called to examine me. I informed him of my fears about ALS and my concerns regarding tingling, pins and needles etc. His reply "YOU OBVIOUSLY DON'T HAVE ALS AS YOU ARE EXPERIENCING SENSORY SYMPTOMS" Hope this helps.Kind regardsDav
 
I'm in a very similar situation. My calves have been twitching non-stop for the last 18 months – hundreds of twitches per minute in each calf muscle. I also twitch all over my body (including my tongue), but they come and go and vary in frequency and intensity. You can read my older posts to see my whole story. I’ve had chronic lower back problems for almost 10 years now. I have herniated disks and spinal stenosis, but no longer have the associated sciatic pain. I’ve have several rounds of epidural injections that have taken care of the pain. I had am emg after about 7 months of twitching that was clean with the exception of the presence of fasciculations. I've seen two neurologists about my twitching, one at a teaching hospital, and they both say it could be from my back issues and probably is benign. Both did not seem concerned at all and said I could take meds, but they have side effects, so I’ve elected not to take anything. I still worry quite a bit because my twitching is now worse than ever, but I’m told that the longer I go with just twitching is a good sign.
 
Thank you for your responses and nothing is too harsh, I am actually pretty unoffendable. I think I just made that word up, anyways. My only problem with all this is the reinnervation that they detected. But the good news is they found no current denervation anywhere, so I have hopes that it is just from an injury. I was actually doig fine with the twitching until I got this report. The problem I think was I got the report while my Dr. was on vacation and explanation of it all was not very clear. They don't really take things like this as urgent matters because not much is going to change in a week, except my anxiety levels that is. From what I can peice together myself it is nothing too much to worry about. Just stuck in the system of follow ups at this point.
 

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