When Twitches Started Worrying Me

[LumLight899]

My symptoms started 6-7 months ago with a aggressive twitch in my left ring finger, at first I ignored it but it was happening so often that it began to drive me nuts. I also noted that the finger felt a little different (clumsy, odd sensation). The symptoms then progressed to my left arm feeling a little clumsy, like it was about to jerk, or the movements were not smooth. Twitches then started in my left forearm, hand, deltoid and biceps. I am a surgeon so had an idea about the ALS thing so I googled and got terrified. I called my neurologist buddy who briefly checked me out. I had increased reflexes, no weakness. He did an emg, clean (that was about 3 months of symptoms). My symptoms have worsened since then, with near constant calf twitching bilaterally, twitch/fasics in every muscle I can think of at one time or another (as I type, my calves are going nuts, my left quad/adductor is twitching, and my left arm feels "shaky and unstable"). Some fasics are mild, some are a large part of the muscle, and others jerk the whole limb. My legs are sore and I feel like I will fall but never have. I went back to see the neurologist again (now at 6 months), hyper reflexes, some clonus in my feet, (which he never checked for at previous visits),no weakness or atrophy, normal emg. He still feels as if I have BFS. He also stated that mild clonus can be present in some people and I am a type A personality. I feel fatigued every day, uneasy, and as if I have jello legs. My left arm still feels shaky and about to jerk constantly. I have tried magnesium and potassium supplements which did not help. He has referred me to another neurologist as we are friends and usually our visits are squeezed in at the end of the day. He feels I need a complete exam from a doctor that does not know me. He remained convinced that I have bfs. I, of course, am not totally convinced as I feel extremely weird. This has not affected my ability to operate or work other than the fact that I feel my calves twitch all day, have big twitches in other places, and my left arm feels weird but it works fine.What I am concerned about is the increased reflexes/mild clonus? Does anyone else her have that as a finding? I always had increased reflexes but never paid attention to the actual exam before. Does all this sound typical of bfs or something different. I have many more days where my symptoms are terrible compared to days with light symptoms (most days are highly symptomatic) I have done a million strength tests, passed them all and had my wife do the ones I had trouble with and she struggled with them as well. Being a surgeon, I know a great deal about anatomy to be informative and a great source of knowledge, but with regard to my knowledge of neurology, I know enough to scare the heck out of me.I appreciate any advice/information anyone can give me. I am an orthopedic surgeon and will be glad to answer questions or give insight to other maladies you may have and also go into detail how an orthopedic surgeon works this condition up. This board is certainly the best forum I have found on this maddening condition and I feel like I am reading about myself. I just want some reassurance on what I should do.

 

[mommyLDN]

Hello, and WELCOME to the board. In short YES, I was told upon presentation with my situation that I do in fact have brisk reflexes and clonus bilaterally as well, although my left foot is a little easier to get going, but it is very much in both ankles. These findings alone were enough to throw me into a tail spin for the past year. I'm not a health care professional, but my mother was a nurse in the Army and my step father was a doc in the Navy, and I was goofy enough to major in health and biology in school, and I knew just enough to know that these findings can be red flags to a neuro. I've been worked up from head to toe for the most part. MRI's have been clean, EMG was clean, blood work never showed a thing except high B12 (I still dont know what that is about), x-ray, CT- scans and nothing, nothing showed anywhere.These are the terms that have been thrown around, Post Viral Syndrome/Chronic Fatigue Syndrome, BFS, Post Traumatic Stress/Anxiety. My symptoms could match all to be honest, which are twitches all over randomly except feet (they stay pretty active), dizziness, IBS issues (I guess thats what it is), buzzing, vibrating, legs feel weak, left arm feels weak or fatigued but as you said works fine, legs feel shaky alot of the time when standing, and then throw in the brisk reflexes and that makes me a pretty irritable person when my legs are bumped, I startle way too easy these days, and my legs hurt alot and feel somewhat tight and awkward when I walk. Any of this sound familiar??I have been given no dxs to date. Welcome to my world ) Please feel free to PM me if you ever wish to compare notes, I'd be happy to share info.Take careRobynn ) P.S. I was told the same thing as you, Type A personality, and clonus and brisk reflexes are not always an uncommon finding for our type.

 

[AussieSurvivor]

Hi and welcome to the good ship BFS! You will experience some calm water some days and cyclonic weather on others. The nature of the BFS voyage!Everything you descirbe ( that I can understand) is suggestive of classical BFS. Not only the twitching but some of the sensory stuff as well. I also feel some anxiety coming through in your post. That does not help symptoms, and the lethargy you describe could also be the result of some anxiety issues. I do also suffer with acute periods of tiredness/lethargy. Although since being on an anti-depressent ( Lexapro) the episodes of lethargy have somewhat reduced. I also found the jello legs, buzzing,weakness etc are also part of the BFS thing. They will wax and wane, as will the intensity and location of the twitches. Although calves are quite common for ongoing constant twitching. As time passes, you will find that you do get used to the twitching to some extent, that you will eventually just ignore most of them. You have had all the testing with a clean bill of health so focus on that- redirect the focus! Also anxiety is rocket fuel to BFS, so control that and you are long way towards controlling symptoms!You should not have mentioned you are a Ortho'!! And I apologise sincerely in advance if this is not the correct interpretation of 'other maladies'... to quote. I would just be interested in your comments. Feel free to 'abuse' me if I am being 'cheeky'!!!I had spinal fusion and laminectomy ( L5/S1) about 18 years ago (spondolythesis-excuse spelling). Was pretty good at the beginning, but pain has started to come back ( lower back mostly), most likely due to the 'side affects' of the fusion ( undue stress on other joints etc) and a broken pedicle screw to boot! Surgery ( redoing fusion completely-taking broken screw out and replacing it too hard to do apparently) has been suggested as a last resort, as it would be very messy ( scar tissue issues etc) to go back in take metal things out and put new bits in (technology has moved on) . Agree? Also someone else did ask the question ( and this is BFS related!) as to whether some of the BFS symptoms could actually be ( bad) back( and surgery?) related. I am thinking....twitching no...sensory stuff..maybe. Your thoughts? A nerve 'agravation/excitation' ( and resultant symptoms) is a nerve 'agravation' I guess ,regardless of the type of the 'agravation'! cheers & take care- you will be fine! cheersRodger

 

[LumLight899]

Thanks for your advice, I am a bit anxious which I know makes things worse. My anxiety is driven by the fact that there is never a waning of the symptoms. The constant fasics in my calves 1-3 a second, all day long coupled with the shakey/jerky left arm and wobbly legs make me constantly wonder but I will say that this site is a big help.I said I was an Orthopedist because I want to help the people on this site. I have no issue answering your questions. This condition is maddening and if I can help guide someone with my knowledge, so much the better. First off, I am concerned about the broken screw. This usually indicates that the fusion may not have taken (pseudarthrosis). You are correct that part of the problem can be related to degeneration above the fusion. Redoing the surgery is not all that difficult but I would consider it as a last resort. My questions to you are: 1. How bad is your pain (0-10 scale, ten being rolled over by a tank but you are still alive)? 2. Do you have any leg pain and where does it go? 3. What are you doing to manage your symptoms now (antiinflammatories, muscle relaxers, occasional pain pill, stretching, physical therapy, chiropracter, epidural steroid injections)? 4. What have your studies shown (Instability on flexion/extension xrays, stenosis on MRI, etc)?Is it BFS related? Not likely but now that I have experienced this condition first hand, I believe that it could certainly confuse the sensory exam and the reflex exam as well but I do not feel that the symptoms are related to BFS. The reflex portion could be confusing because radiculopathy is a lower motor neuron finding causing diminished reflexes and weakness. As we know, BFS can cause increased reflexes indicative of upper motor neuron problems.Pleases feel free to ask what you desire, I came to this site for advice myself, and I appreciate you taking the time to respond. I go for my second opinion tuesday with another neurologist, hopefully this will provide some direction and relief.

 

[LumLight899]

Appointment came and went, no new emg but same conclusion as other neurologist, BFS. Symptoms still as bad as ever but I am reassured. Now turning my focus to learning to ignore/accept the odd sensation/feelings I have all day. I thank all who have responded as you are all very reassuring.