ALS & Fasciculations posted by Dr. Will

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Re: ALS & Fasciculations posted by Dr. Will

Postby LApea on August 27th, 2013, 9:55 am

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
You drown not by falling into a river, but by staying submerged in it. -Paulo Coelho
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Re: ALS & Fasciculations posted by Dr. Will

Postby mwagner on August 27th, 2013, 10:11 am

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).

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Re: ALS & Fasciculations posted by Dr. Will

Postby Karenmg on August 27th, 2013, 9:45 pm

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?
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Re: PD and Fasciculations?

Postby Karenmg on August 29th, 2013, 8:40 pm

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?
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Re: ALS & Fasciculations posted by Dr. Will

Postby TerryB2865 on August 30th, 2013, 6:39 pm

Dr. Will

As 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!
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Re: ALS & Fasciculations posted by Dr. Will

Postby Dr. Will on September 1st, 2013, 11:16 am

Parkinson's Question

A good primary care physician or a Neurologist can often diagnose Parkinson's Disease based on 2 out of 3 clinical findings:
1. Resting tremor
2. Bradykinesia: slow walking with shuffling
3. Rigidity: falling easily and very stiff

If 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.

EMG
Just 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,
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Re: ALS & Fasciculations posted by Dr. Will

Postby Karenmg on September 1st, 2013, 10:15 pm

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?
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Re: ALS & Fasciculations posted by Dr. Will

Postby jerry2 on September 2nd, 2013, 9:57 am

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 you

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Re: ALS & Fasciculations posted by Dr. Will

Postby Seepi27 on September 8th, 2013, 7:27 pm

Karenmg wrote: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?


Xanax for FOUR years? Heavens, why on earth is your doctor putting you through that torture?
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Re: ALS & Fasciculations posted by Dr. Will

Postby lrt6131 on September 13th, 2013, 3:01 am

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?
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Re: ALS & Fasciculations posted by Dr. Will

Postby aztwitchy on September 13th, 2013, 11:28 am

lrt6131 wrote:New to board. ------- Anyone else have this problem?


welcome to the forum


you will QUICKLY realize the answer to your question is ALWAYS YES....there isn't a weird, scary, or freaky symptom that multiple people on this forum have not had. I am pretty sure the population on this forum have covered all basis of bizarre including me.

don't freak out...your symptoms are not unique....they are pretty typical BFS type stuff.
"Health is a state of complete physical, mental and social well-being, and not merely the absence of disease or infirmity." ~World Health Organization, 1948
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Re: ALS & Fasciculations posted by Dr. Will

Postby StressLess on September 16th, 2013, 11:56 pm

Dr. Will wrote: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


I think I love you :) Love points number 4 & 5 :)
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Re: ALS & Fasciculations posted by Dr. Will

Postby Anxious guy on October 16th, 2013, 8:24 am

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 !
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Re: ALS & Fasciculations posted by Dr. Will

Postby BFSBurger on October 16th, 2013, 12:35 pm

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
How I resolved my BFS within 1 year of onset:

viewtopic.php?f=3&t=19128
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Re: ALS & Fasciculations posted by Dr. Will

Postby jebmd on January 9th, 2014, 5:54 pm

Hello all,
I am new to this forum but have been lurking here since September 2013. I am a 46 year old female family physician living in Canada's "winter city". I wanted to thank you Dr. Will for your wonderful post that I read a long time ago that really helped me to calm down when I started experiencing fasciculations EVERYWHERE following a severe viral illness at the end of September 2013. I also read "BFS in a nutshell" also very informative. Being a physician, I felt compelled to look up information on Upto Date, a medical database for information regarding twitching-and wouldn't you know it up came ALS-no better than Dr. Google really since there were only a very few lines about BFS. Needless to say, never having experienced anything like this in the past (twitching, cramping, weakness, fatigue) I also went on the ALS forum. I have a second cousin who died of ALS in 2011 at my age, a high school classmate who died at age 45 in 2012 after living with the disease for 7 years, a high school chemistry teacher who had it and died at age 61 and a more distant relative who was diagnosed in her 80s. This disease was hitting me in the face. I went to my GP of course who found my neurological exam and my bloodwork to be normal. A normal MRI came next. I am deficient in Vitamin D and B12 and am taking supplements for these. I also had anemia in July and had a colonoscopy and gastroscopy that were normal and iron supplements have corrected the anemia. I was waiting for a neurology appointment for EMG that would take several months but one evening in December, I had a horrible fasciculation in the back of my right shoulder that went on for an hour and was very painful into the next day. I finally broke down and phoned the neurologist Dr. K. and told her my symptoms over the phone. I am fortunate that I send over 90% of all my neurology referrals to her and she took my call immediately even though I told her receptionist not to interrupt her patient flow and that this was a personal call-I myself get quite annoyed when this happens. On hearing of my symptoms, she scheduled my EMG for the next day and told me straight out that she was 99% sure that this was benign but that the EMG should be done which was fine with me. I asked her how many patients with ALS she has seen and her answer was "too many"-so I felt confidant that she had good experience in this disorder. After that conversation, all the twitches that I had been having subsided almost down to background noise I was so relieved-this was before even having the test. I had the EMG the next day and the neuro exam was totally normal as was the EMG. She did not see ANY fasciculation anywhere (nor could I feel any in the office that day) and none were picked up on the EMG either-the test was really no big deal, the worst pain was when she told me to contract the muscle she was poking. I only had the right arm and leg done. She did pick up a case of mild carpel tunnel in the right wrist.
Unfortunately, I am still twitching, some days are worse. My stress levels are always high because of my job and my kids, one in university and one struggling in high school. I am a poor sleeper and have been for years. I use clonazepam at night to sleep which helps some. My husband is getting fed up with all my obsessing about illness but I see too much suffering almost on a daily basis just as part of my job. He did not believe when I diagnosed myself with appendicitis this past May either until it was confirmed on US. I have started cognitive behavioural therapy in an effort to manage the stress and am thinking about a yoga class. I am also considering calling the neuro back to test my left arm and leg as most of my current symptoms are there-I can see no weakness but do have pain in the upper arms frequently which my be related to my non-ergonomic work station when I am entering my charting into my electronic medical record. Also, I never learned to type so my typing posture and hand position are terrible.
I think it will still take me some time to deal with this but the longer it goes on without anything sinister happening, the better I feel. In the meantime, I am trying to be a doctor, wife and mother to the best of my ability.
I wanted to thank those on this forum who have helped me tremendously with their posts as I went through this diagnostic process. I am still dealing with it of course but hopefully each day will get easier. Thanks for reading and posting.
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Re: ALS & Fasciculations posted by Dr. Will

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