ALS Diagnosis - Dr. Anthony Will

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sirwilliamwilliams

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Dear BFS Website,My name is Dr. Anthony Will and I am a dual Board Certified Neuromusculoskeletal Medicine & Family Medicine physician in Glendale, Arizona.I am not an ALS specialist. My NMM practice is focused primarily on various pain syndromes such as Reflex Sympathetic Dystrophy, Fibromyalgia, and Sports related injuries. I have been involved in diagnosing three ALS cases in my 10-year career.I have been very impressed with the great encouragement and support that this website offers for many individuals that are effected by fasciculation’s of unknown origin. These certainly can be a very scary experience.I would like to share some very encouraging information based on my own experience with fasciculation’s and seeking consultation by two Neuromusculoskeletal Disease Neurologists. Physician one at The Mayo Clinic in Scottsdale Arizona and physician two in private practice in Phoenix Arizona who operates an ALS Clinic and has cared for one of my past dear patients with ALS.About 10 months ago, I like many others, had experienced an increase in stress in my life with the sudden onset of muscle twitches in the left foot and soon all over. Of course I knew that I was not experiencing any weakness, but like many I started to second-guess myself and I began my own obsession with daily strength tests. I even would ask my fellow partners and medical students to check my reflexes to ensure that they were not hyperactive. Finally it was time to see a specialist and obtain an objective non-biased evaluation. I had the MRI, EMG, and several detailed neurological exams. After two NMD specialists assured me that the fasciculation’s were “benign” I finally let go of the worry and fear and now I barely notice them.Here is some sage information shared by experts in the field of ALS with regards to fasciculations:1. Everybody experiences fasciculation’s.2. They are more common with exercise, dehydration, caffeine use, increased anxiety and stress.3. They are not an area of medicine that receives much research funding or medical education attention due to their non-life threatening status.4. If fasciculation’s are present without weakness or obvious muscle atrophy then it is NOT ALS.5. Fasciculation do not precede weakness and thus will not turn into ALS later in life.6. People with ALS present with unexplained weakness first, not just fasciculation’s.7. If a patient has a normal neurological exam and EMG they do not have ALS.8. Treat underlying anxiety.9. See a well-qualified physician and put your ALS Fear to Bed.10. Breathe easy and laugh at them. They kind of tickle.God Bless & Be Well.Dr. Will
 
Dr. Will,Thank you for your post! I'm sure this will ease the minds of many new twitchers on this site and future twitchers who come across this post! My guess is that people are going to see the statement that everyone twitches and want to know, but do they twitch to the levels that some of us experience? I know many people on here, myself included, feel constant twitching all over like grapepie popping under the skin in every muscle including the tongue. So much that they are impossible to count during the day. I'm over 2 years into BFS and very comfortable with my benign diagnosis but maybe you could comment on the frequency or location of twitches specifically the tongue which seems to freak people out the most? Does it matter?Again, thank you for this post. Its going to do a lot of good!-Matt
 
Thank you for the kind comments and excellent questions.With regards to Fibromyalgia and twitching.Yes indeed there is some muscle twitching noted in Fibromyalgia patients. However, that is not part of the diagnostic criterion.Also the degree of twitching/fasciculations is very minor in comparison to BFS.They are two separate and different pathological processes, in my opinion.Interestingly they are both syndromes which is a group of symptoms without a current known cause.Obviously more research is needed.The good news for all BFS patients that live in a waxing and waning fear cycle, based on changing locations, is that this disorder does cause fear and worry until reassured of the diagnosis but it generally doesn't cause severe pain and certainly is not fatal, unlike many other terrible diseases processes.I hope this helps.Happy to answer more questions.God BlessDr. Will :)
 
Very good post!I blew up with a stressful job change. I had a huge range - twitches, bubbling fasics, buzzing, tingling, vibrations, shakes and pain.I did the whole MRI-EMG (2x) route with MS specialists. Nothing found. I was told "fibromyalgia" and BFS. Started Lyrcia, and the twitches died down. I was obsessing over MS, than ALS, and then I'm trying to let go of ALS and eventually MS fears. Still get little muscle "burps" and buzzes and tingles here and there.
 
Thanks for an excellent first post. Your word may carry much more weight for new comers than ours, and goodness knows that in the early days of BFS it is hard to accept the twitches as harmless. Do you have any words of reassurance for the tremoring faction of BFS sufferers? For some of us this symptom is much more concerning than the actual twitches.
 
One of the best, reassuring post i have ever read Dr. Will. Thanks for the info. I have a question that many of us on here may wonder about and i personally have read about. The question is, do u think there is any relation to bfs and herpes?? Either oral or genital. I have read that herpes lies in the nerves so maybe that could be another possibility? Im 8 long years into twitching but still no answers. Just ppl saying it could be possibly because of stress, anxiety, caffeine, etc. In my opinion, there has got to be a root cause for this condition since so many ppl in the world suffer from this condition. I dont use any caffeine, i take xanax for stress/anxiety and to help sleep but i still have the crazy twitches.. ive been offered lyrica but have heard it can damage the heart. So whats your opinion on that?
 
Great questions again!I have done a great deal of medical medline searching and reading various Neurology Texts on this subject.It is hypothesized that an infection either viral or bacterial may infect a certain part of the spinal cord, the anterior horn cells.This would make both physiologic and anatomical sense.This is not unique to BFS, as polio and Guillian Barre have been shown to do this.Please note those are separate processes than BFS.Is it herpes virus?Could be any virus, but more research is needed to answer that question.I have seen several articles on Gabapentin/ Neurontin having very good success for the treatment of BFS.It is a non controlled substance and is not habit forming.Obviously, please consult with your local area treating physician to implement therapy and obtain diagnosis.Best,Dr. Will
 
Tremors Question.Actually it was the left hand quiver/ tremor that finally caused me to seek an unbiased objective opinion.The Tremors/ quivers are most likely caused by the underlying muscle fibers that are fasciculating.Tremors are NOT a component of ALS and NOT part of that diagnosis.Parkinson's tremors are resting tremors usually seen in people over 60 years of age.It is also associated with very slow shuffling walking and rigidity.Completely different from the quiver and twitching of BFS.God Bless,Dr. Will
 
I just want to say thank you so much for your post, it will be an invaluable asset to this community. You're awesome for taking time from your busy life to post! :D)
 
I agree. Thank you so much. It means a lot to hear these words come straight from a medical professional/neurologist. As much as we can reassure each other that we're okay, based on our conversations with our doctors and our general knowledge, your words carry a lot of weight.This will especially be useful for anyone who is new to BFS and extremely scared (like most of us have been).Mitra
 
Dr will, I'm 61 had twitches in my legs since my 20s. In February I developed a persistent twitch in my left tricep , bicep and forearm. It's a fast jolt like twitch. Some days better than others. No weakness. Normal EMG. Feel good except for the fear I have thinking its Parkinson's. ms in my family. Neuro says I'm fine but this new persistent twitch in the same place everyday has me spooked. Ive been on 1mg xanax for 4 years for tinnitus. Common?
 
Seems like ever time u hear about a PD diagnosis u hear it started with a " slight twitch" and there is no definitive test for it. So how do U keep from worrying that your twitches are not that even if u had a normal EMG and neuro exam? Lots of posts worrying about ALS but what about PD?
 
Dr. WillAs others have written, thanks for your post. Invaluable information. I have a question for you or perhaps your colleagues who are EMG experts. How thorough does the EMG have to be to be accurate? i have read on other sites that some people have had EMGs lasting two hours that picked abnormalities as opposed to testing that is one needle stick per muscle and lasts maybe 30 minutes. Is the shorter test, when done by an experienced doc, enough? Thanks!
 
Parkinson's QuestionA good primary care physician or a Neurologist can often diagnose Parkinson's Disease based on 2 out of 3 clinical findings:1. Resting tremor2. Bradykinesia: slow walking with shuffling3. Rigidity: falling easily and very stiffIf the diagnosis is uncertain the doctor may try a trial of medication to see how one responds or order a special MRI called a Dat Scan to help image the dopamine regions of the brain.EMGJust like EKG's for the heart. The longer one has the test the more likely it will yield some abnormal findings.For example fasciculations: Everyone has them.They are looking for very specific findings with ALS.If your EMG and neuro exam are normal you should not second guess.Obviously see your local doctor to have any medical symptoms evaluated.Best,Dr. Will
 
Any relationship to bfs and Parkinson's ? Twitches always worse at rest but gets them otherwise Its like someone is punching me in mt left tricep. Can see tremor in my elbow and forearm. I'm 61. Healthy feel good. No slowness or balance. Just these thumping twitches which came on 8 months ago. Normal EMG and neuro exam. Think further testing warranted?
 
Thanks. I am suspecting I have fibromyalgia as I don't only have fasciculations but other strange symptoms like my hands tremoring in the early morning (about 5 AM) when I wake up (stopping when I am fully awake), my hands are so stiff at night I can barely move them (but not inflamed), my joints are tender on hands and feet and I have migrating joint paint, but without swelling and inflamations (I was tested for RA several times and it is not RA), I have nerve pain in hands and feet (mostly feet when I put shoes on), I have tingling etc. But the most crippling is the joint pain and stiffness at night, and several other muscular pains that come and go around the body (like low back muscle pain etc.). Could this be fibromyalgia in your opinion? Can fibromyalgia and BFS coexist?Thank youJerry
 
New to board. My twitching started spontaneously 1 week ago. Twitching is all over during day, but at night it is primarily in legs. When I first step out of bed in morning--let's say I get a drink quickly--& then get back in bed, my legs are twitching at a very fast rate followed but an immediate sense of feet sweating. Anyone else have this problem?
 
I've currently got a constant twitch on the tip of my tongue and sometimes the tip but too the right... It twitches when I move my tongue in certain ways or say certain words ! I can feel it and see it.... It's made me very anxious as its persisted for about 3 weeks... I have also twitches all over... But it's the tongue one that worries me !
 
Dr. Will -Wanna win a Nobel Prize? *Help us determine if BFS is:1) A pathogen infection (sudden onset, often post-flu syndrome, often after swollen glands) which infects the spine / brain / nerve system similarly to herpes viruses.2) A failure in the HPA Axis (majority here are extreme fitness enthusiasts, dieters, or severe anxiety disorder. some with high cortisol, low testosterone, and other indicators of pituitary adrenal dysfunction)3) An exposure to specific environmental toxins (pesticides, etc).4) A subset of the Neuromyotonia disorder, and all that entails (paraneoplastic 20% autoimmune 80%) but keeping in mind, most here have zero lab indication of autoimmunity, and zero cases of cancer.The whole "Its not ALS" thing is very beneficial to hear!Would love someone to start asking "Well ... then what is it?"If that question can be answered, nobody will need to be told that it's not ALS anymore :)This is where the need currently is, research-wise.What needs to be done to get someone with the resources, to start finding answers?-BFSB-* Nobel prize will be made by forum members using arts and crafts materials, and glitter
 

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