My Story

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My Story

Postby DrJCool on November 15th, 2002, 8:32 pm

What can I say but bless all of you fine people for bearing your souls on this much needed website. Kudos to all...and my hat especially goes off to Arron, who has gotten me through many a tough time without even knowing it. This is my first posting!
I am a physician, a Radiologist to be exact, but while on this website I beg your indulgence I am just like one of you, scared out of my mind, so no medical questions please...but human ones and feelings expressed are just fine.
I began my first "twitches" on July 25, 2002 while in my office. I found my right index finger moving on its own, and pardon the pun, I found it most "unnerving". This continued and progressed over several weeks but was also accompanied with numbness and tingling into my ring and little fingers. I went to see a neurologist after about a month who, after physical exam, diagnosed ulnar nerve entrapment at the elbow, not all that uncommon and suggested limiting pressure applied to the elbow upon sitting and trying somehow to sleep with the elbow as straight as possible, no mean feat! It didn't help. I then went to see a famous hand surgeon who offered much too quickly to operate and to transpose my ulnar nerve to the front of my elbow. I said thanks but no thanks. That's when, you know what, really hit the fan! My symptoms starting to explode with fasciculations seemingly devouring my body. I couldn't sleep at night, would get up at 2-3AM and couldn't go back to sleep, had night sweats, was unbelievably anxious! I was convinced I was dying with ALS and would soon be a burden to my wife and kids. Here I was a veritable basketcase, the complete opposite of the "together" and "with it" ME! I made an appointment for an EMG but the earliest they could see me was November (this was early October). Nonetheless, I found someone who would do it over the subsequent few days. Well I had it done and except for some mild ulnar nerve slowing (possible mild ulnar nerve entrapment), ther was no evidence of denervation...NO EVIDENCE OF ALS. The symtoms had not abated, and I continued to test my strength and stamina like a crazy man to no avail. Anyway I kept my original EMG appointment 3 weeks later, and the 2nd test essentially agreed with the first!!!!! I was getting used to trying to live with this craziness when all of a sudden, 2 days ago after my daily 50 minutes on the treadmill, my quadriceps muscles in both legs began to feel weak, with buzzing feelings and fasciculations and they are still like that. These are the first symptoms of their kind in my thighs. Now, of course, I am worried because none of the neurologists tested my lower extremities with the EMG...they just did both upper extremities. Has anyone else had similar symptoms? Why am I driving myself batty??? This is so unlike me(prior to the onset of the most unpleasant of symptoms, at least). Does anyone have any thoughts? Arron....Please help? :(

Postby tlotoxl on November 16th, 2002, 1:10 am

it certainly seems like a lot of people on these forums have reported exercise intolerance - could it be that you had that? i sometimes get a buzzing feeling when i exercise and i wonder if i'm getting weak, but not so weak that i could be sure. it's been going on like this for over two years in my case with no change, really. still, if i were you i'd probably have another EMG just to soothe myself, but then again there aren't really any waiting lists for EMGs here in Japan. (but i still haven't had an EMG myself, since the doctor said i would noctice profound weakness if i had als and my weakness has been very subjective)
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Postby Rar on November 17th, 2002, 8:08 pm

The neurologists tested your upper extremities because that's where you first noticed twitching. If the twitching was caused by als don't you think the emg would have found evidence of als in this area. This is the area where the problem first began, right?
Also remember als is extremely rare. You have only 1/1000 of 1% chance of getting it. Benign twitching occurs in 60% of the poplulation, though not everybody gets it as much, or as strongly as some of us. Which do you think is more likely that you have, bfs or als?


Postby Rar on November 19th, 2002, 6:15 pm

I also notice when I am freaking out, which has been a lot of the time lately, that I may be applying sort of microscope effect to all the feelings in my body, scanning for anything unusual. When I am not freaking out everything feels normal for the most part, mostly because I am not looking so closely or zeroing in on things so much. I would attribute many of the strange feelings people are talking about in this forum to hyper-vigilance, brought on by anxiety. I would also include the sensation of weakness you speak of. Your percieved weakness is actually probably a normal feeling of tiredness, caused by being a lowly human like all of us, however you have been so worked up lately that you are noticing this tiredness and amplifying the sensation by zeroing in on it. To be tired and experience pain is very normal, in fact so normal that most people are constantly blocking it out. I suppose we all start blocking out pain and tiredness sensations, probably very soon after we are first born. Anyways, stress and fear can wear on a person too, and cause feelings of weakness.
By the way, I just did a search on anxiety, and one rather official looking website listed tremors and twitching in the very first line of symptoms related to the condition of anxiety.
My recommendation is that you go to an accupuncturist. A good accupuncturist can help you gain mental and physical balance. I know western medicine is not very good at treating the body and mind together, but this is essential for longterm wellbeing. Also, try to make an adventure out of every moment, espescially when you are worrying. This is the hardest time, but also the most powerful time to move positively in the direction of having fun with life, rather than be terrified by it. After all life could end or change completely at any moment. We didn't come into this crazy world for it's soothing effects.

Postby DrJCool1 on November 19th, 2002, 6:35 pm

Rar, thank you for you advise. I do appreciate your input and concern.
Thank you all from the bottom of my heart for being here and sharing
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Postby Jen on November 19th, 2002, 8:37 pm

My problem probably started in my thighs a couple of years back, although the fascics and buzzing are more recent. I was always very muscular in my thighs and could outdo most people on anything that involved quad strength. These days, however, if I over-do it, I get the same symptoms that you mentioned: weak feeling in the thighs, buzzing and fascics. Rest is the only thing that calms down the buzzing and fascics. I think that this is part of the BFS exercise intolerance. I recently discovered that swimming works for me. It strengthened my thigh muscles and those symtoms in my thighs went away for the most part. I love how you wrote, "Here I was a veritable basketcase, the complete opposite of the "together" and "with it" ME!". That is exactly how I felt last summer when my symptoms were at their worst. I don't know what disturbed my family the most: the twitching muscles or the complete (and thank goodness temporary) "flip" in my personality. I was always the "calm" one, and here I was falling to pieces. This website, a good pair of swim fins, and a patient doctor, has allowed me to be "me" again.
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emg was not done too soon etc.

Postby Willie on November 20th, 2002, 8:20 pm

I copied this from the MGH site. It is from Jayman who did great research on EMG's. I hope this helps.................
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. Based on your post, it would be safe to assume that muscles innervated by your lumbrosacral, thoracic, and cervical LMN SPINAL ROOTS were sampled. Again, because the damage begins in the LMN spinal roots (also known as the anterior horn cells - you may have seen this term too - anterior horn cells = lower motor neuron roots)

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. 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
-end edit-

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.
-end edit-

Your NORMAL NEURO EXAM + your CLEAN EMG means there is no evidence that your UMN's and LMN's are dying. Thus, that's why you (Johnny and Sarina) don't have ALS.

A few more points:
1) Rick's post is based purely on his opinion. I like Rick and I'm not bashing him, but choose what you want to believe. His OPINION or the FACTUAL INFORMATION about UMN and LMN physiology posted here

2) Kytkat is 100% right in her statement about the future of getting an illness. No doctor in his/her right mind can NEVER say that you will NEVER get any particular disease (including ALS) in the future.

3) GT Wiggles had a very thorough EMG. Twenty-six sticks are unnecessary to rule in or rule out ALS. I saw Yale's co-director of their MDA/ALS clinic and research center. These people 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, not 26!!!

BTW, that clean EMG was done a little more than 4 months into twitching. A year is not needed to confirm that the sx are not ALS related. Before that, I had a 100% clean EMG at only 3 weeks into twitching by Joe Local Neuro.

I hate to say this, but you guys need to get a grip on the difference between FACT and OPINION.

Print this thread, Print wiggles' original post about his 26 stick EMG, and print Rick's statement about time and being out of the woods. Take all 3 copies to your next neuro appt. Ask your neuro (who is CERTAINLY MORE QUALIFIED than all of us here) which statements he/she agrees with the most.

Go ahead..take the Pepsi challenge.

Take care, and I sincerely hope you guys feel better and less anxious.


-edit- I had 8 EMG sticks rather than 7, so I changed my post to reflect that
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I love it!

Postby jblack on November 20th, 2002, 8:40 pm

Guys like Jay deserve an award. Both totally hilarious and greatly reassuring. Bless 'im.
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Postby JohnV on November 23rd, 2002, 12:13 pm

MOved to the Support Group since it is more of a support topic, rather than personal experiences.
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