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Neurology (Expert Forum)
ALS Questions
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ALS Questions
by SkipB, Jul 14, 2004 12:00AM
I have a few specific questions about ALS. First, let me say I am a 34 year old male with a history of exercise including lifting weights and running. Also a history of hypochondria.
I have noticed fasciculations for 7.5 months, starting in my left forearm then at random in other parts of my body. The left forearm stopped twitching after two weeks but the random ones have continued. I have also noticed what I have thought is slightly smaller muscle bulk in my (dominant) right hand, bicep and shoulder than my left. Although I don't really know if this is new or just something I've noticed since my ALS fear began.
I have seen no strength loss in that arm or anywhere else. In fact, I have increased my weight lifts in all muscle groups since this began, my running times have improved and I've gained almost 10 lbs.
Neuro exam 1/28 no hyperreflexia, good strength bilaterally, no UMN signs, CPK normal. Nuero exam 3/3 same. EMG 3/22 19 sticks including right bicep, deltoid, both legs, tongue and thoracic all clean. Clean follow up exam 4/21. My Neurologist is not a NM specialist but studied ALS as resident specialty under DR. Appel at Baylor. His diagnosis was Fasciculation Syndrome.
My questions are:
1. In your opinion, does a timeframe of 7.5 months with no progression and actual strength gain make ALS unlikely in my case? Plus a clean EMG?
2. It seems unlikely for a person to have atrophy for several months due to ALS and have no loss of strength in that muscle. Is that an accurate statement?
3. Is limb asymmetry common?
Thanks for your help!
I have noticed fasciculations for 7.5 months, starting in my left forearm then at random in other parts of my body. The left forearm stopped twitching after two weeks but the random ones have continued. I have also noticed what I have thought is slightly smaller muscle bulk in my (dominant) right hand, bicep and shoulder than my left. Although I don't really know if this is new or just something I've noticed since my ALS fear began.
I have seen no strength loss in that arm or anywhere else. In fact, I have increased my weight lifts in all muscle groups since this began, my running times have improved and I've gained almost 10 lbs.
Neuro exam 1/28 no hyperreflexia, good strength bilaterally, no UMN signs, CPK normal. Nuero exam 3/3 same. EMG 3/22 19 sticks including right bicep, deltoid, both legs, tongue and thoracic all clean. Clean follow up exam 4/21. My Neurologist is not a NM specialist but studied ALS as resident specialty under DR. Appel at Baylor. His diagnosis was Fasciculation Syndrome.
My questions are:
1. In your opinion, does a timeframe of 7.5 months with no progression and actual strength gain make ALS unlikely in my case? Plus a clean EMG?
2. It seems unlikely for a person to have atrophy for several months due to ALS and have no loss of strength in that muscle. Is that an accurate statement?
3. Is limb asymmetry common?
Thanks for your help!
Doctor's Answer
by CCF-Neuro-M.D.-CS, Jul 17, 2004 12:00AM
Without examining you I can not make an accurate clinical diagnosis. The fact that you have had no muscle weakness, a normal neurologic examination, and reportedly a normal EMG makes the diagnosis of ALS unlikely. Assymmetried in muscles can occur in normal people due to using certain muscle groups more then others, typically in the dominant arm. It seems that you have had a good evaluation, however if you remain concerned an academic neurologist consulation would be the best next step. Good luck.
Because your EMG's are clean now, it means that your current symptoms ARE NOT due to ALS. Think of it like this. You get a cold and you're sneezing, coughing, have a soar throat and a fever. These are symptoms of a virus that causes the common cold. BEFORE those symptoms become noticeable, the virus must be set in and do some damage BEFORE sx become noticeable. ALS, or any other disease works the same way. The motor neurons must begin to die before symptoms surface. It is often estimated that nearly HALF of the body's motor neurons are dead by the time a patient notices symptoms and gets an EMG.
The EMG must show that the motor neurons are being destroyed in 3 of 4 spinal motor neuron regions. These are the lower motor neurons (LMN). So, your legs are innervated by the LMN's of the lumbrosacral region of the spinal cord, your ribs, chest, back, and certain muscles of the hands/forearms are muscles that are innervated by the thoracic spinal region, your arms, forearms, hands etc are innervated by the cervical spinal region, and your throat and tongue are innervated by the bulbar (or brainstem) region of the spinal cord.
On top of that you must show upper motor neuron damage in areas where muscles are innervated by at least 3 of those 4 regions. The upper motor neuron (UMN) damage occurs because the brain's motor cortex dies too. Thus, if your physical exam didn't show any 4+ reflexes or clonus anywhere, then you don't have upper motor neuron damage.
So to have ALS you must have both UMN and LMN damage shown by evidence obtained in the EMG and your physical exam. One other thing. You may or may not have seen the term anterior horn cells before. All you need to know is that anterior horn cells = lower motor neuron roots. The lower motor neuron roots of the spinal cord are called anterior horn cells because they are located and branch out from the anterior (front side) of the spinal cord.
On the LMN end of things it makes no difference which side or limbs got tested by the EMG. Because ALS is a MULTIREGION motor neuron disease, the motor neuron roots in these regions would have to be severely depleted in all these regions before you even notice symptoms. By the time someone who truly has ALS shows symptoms, the EMG will show the associated damage.
I say it makes no difference which particular muscle or which side the EMG is done on, because the motor neuron ROOT is what dies and causes ALS. There are 639 muscles in the human body. Think of a muscle in a particular spinal region as a leaf of a tree. Think of its associated Anterior Horn Cell as the tree's root. You are the tree. When the roots die, the leaves don't get the nourishment they need, and they wither. By sticking the needle in any particular muscle, you're measuring the health of the ROOTS and not the muscle. So, by sticking ANY muscle, the EMG would see the damaged root. So, the EMG measures the HEALTH at the ROOT and not the particular muscle. The ROOT stems to both sides of the body. That's why it makes no difference which particular muscles or side is tested, because MANY DIFFERNET MUSCLES share the same ROOT or ROOTS. SO LONG AS ENOUGH INDIVIDUAL MUSCLES ARE SAMPLED (usually 6-8)TO INCLUDE MOST OF THE LEVELS (ie C1-8, T-12, L1-5 etc) OF AT LEAST 3 OF THE FOUR SPINAL REGIONS, THEN THE EMG WAS THOROUGH ENOUGH TO CATCH LMN DISEASE IF ITS TRULY THERE. SO LONG AS ENOUGH INDIVIDUAL MUSCLES ARE SAMPLED (usually 6-8)TO INCLUDE MOST OF THE LEVELS (ie C1-8, T-12, L1-5 etc) OF AT LEAST 3 OF THE FOUR SPINAL REGIONS, THEN THE EMG WAS THOROUGH ENOUGH TO CATCH LMN DISEASE IF ITS TRULY THERE. NOT A TYPO!REPEAT THIS A BAZILLION MORE TIMES!!Remember, the disease of ALS is CENTRALLY acting, and not PERIPHERALLY acting. The symptoms are what's FELT peripherally, but the damage is CENTRAL! What the tree feels is that it's leaves are withering, but it's because it's roots are dying.
This is about as basic as it gets. I don't mean to be rude, but if you don't get this basic level of motor neuron anatomy and function, then YOU ARE IN NO POSITION TO EVEN BEGIN TO CONSIDER THE PROCESS OF SELF DIAGNOSIS!!!!!!!
What I am stating here is a summary of what's known as the El Escorial Criteria for diagnosing ALS. This criteria was drafted and agreed upon by the members of the World Federation of Neurology (WFN)
So, if you choose to haphazardly paste together random accounts of individuals you do not know and take that as fact over what the WFN has to say, we'll I dunno...
I just wanted to be CLEAR on my SOURCES of information, and where I'm getting this stuff from. If you can't handle reading about ALS, then I would not suggest doing Library or internet searches on the WFN or El Escorial criteria. But, if you so choose, you can check on your own to see if what I'm saying gels with what they're saying.
So, a NORMAL NEURO EXAM + CLEAN EMG means there is no evidence that your UMN's and LMN's are dying. Thus, that's why you don't have ALS.
A few more points:
1)Remember, No doctor in his/her right mind can NEVER say that you will NEVER get any particular disease (including ALS) in the future. The following is quoted from Kytkatz (Belinda - The Happy KytKat) in the same thread linked at the beginning of this post:
"A clean EMG at 30 doesn't mean you won't get ALS at 70. It's the same thing as not having cancer at 30 doesn't mean you will never get cancer. Here's another way of saying it - just because you haven't had a car wreck at 30 doesn't mean you will never have one.
A clean EMG now mean that your symptoms are NOT caused by ALS. No doctor or test can tell you that you will never get something. We don't have one test that you can have now that can tell you what you will or won't have something in the future. It means that you don't have it now. Odds are, you'll never have it.
Make sense now? "
(Thank's KytKat )
2) Twenty, Thirty, Forty etc EMG sticks ARE WASTEFUL and UNNECESSARY to rule in or rule out ALS. I saw Yale's co-director (Dr. Novella) of their MDA/ALS clinic and research center, and he gave me my definitive EMG. These people at Yale see more ALS than your typical ALS SPECIALISTS, and INFINITELY more than Dr. Joe Local Neuro. He gave me 8 total sticks on my right side, and that was enough to prove that I don't have ALS. He even told me afterwards that if something bad showed up in those 8 sticks, that he would have only had to do another 3 or 4 to confirm that my sx were due to LMN death. Altogether, that adds up to 11-12 sticks max, and not 20, 30, or 40 in all 4 limbs, the trunk and throat/tongue!
3) FYI: that clean EMG was done a little more than 4 months into twitching. SEVERAL MONTHS TO A YEAR OR MORE ARE NOT NEEDED TO CONFIRM THAT THE SYMPTOMS ARE NOT RELATED TO ALS. Before that, I had a 100% clean EMG at only 3 weeks into twitching by Joe Local Neuro. The clean EMG at 4+ months by the specialist confirmed the original. Remember, DAMAGE TO THE LMN'S & UMN'S MUST BE DONE BEFORE SYMPTOMS BECOME APPARENT!!!
4) In your web surfing or library searches, remember to distinguish FACT from OPINION. The pasting together of random accounts of individuals on the internet you do not know ISN'T EVEN OPINION, LET ALONE FACT!