I am a 45 yr male, 190 lbs,
My job is low stress, I'm married, have a 4 year old boy.
I am a test engineer and work at a desk and laptop computer all day.
My excercise comes from doing weekend yard work and my off-shore
fishing boat, and playing with my 4 year old.
We are financially comfortable and not stressed in any way.
I have a very low key personality and am not really a hypochondriac or
get stressed out about things very easily, even in the face of all
these symptoms. I normally don't have to take anything but Tylenol
about once or twice a year for colds that I catch. I rarely ever have
to go to the doctor for anything but I do get a yearly physical and am
good about it too.
I have what most people would consider a normal diet.
My skin is perfectly healthy, some seborreah that started 7 years ago
on my face which I can effectively control with Ketoconozol
<--spelling? (Nizoral creme)
In great health until...
Oct 2005 my right hand middle finger on right hand started twitching and pulling.
About a week later I started feeling twitches all over my body
randomly but about equally on both sides from shoulders down.
So I went to the neurologist at this time, had EMG/NCS and everything
is fine, he said it was just benign facilations.
No problem, but then the symptoms changed..
About two weeks after that, my left leg started having an electrical
shock tingling buzzing sensation, worse right after exercise, but
almost constantly except when I wake up in the morning.
About two weeks later, I started getting this weird trmeor in my hands
and shoulders, I can feel it more than it can be seen, but my wife
noticed my fork shaking at the dinner table and commented about it.
About two weeks after this I developed a strange tremor only at night
when asleep, if I wake up and try to move a pillow, blankets, or grip
my fists, I have a really bad tremor and weakness (Note: this symptom
goes away moments after I get out of bed).
About two weeks after that my left leg developed a persistent muscular
ache just below and just above the knee. About this same time
developed a persistent twitch/pulse in the arch of my left foot. Most
twitching started occuring in this same leg and twitching on the side
of my left foot too. Very little twitching in right foot.
I went to the neurologist who did an EMG/NCS, a second time in April
2006. I also had a Cervical MRI done. All EMG/NCS and MRI were
About 5 weeks ago just before I went to my second neurologist visit,
the night time tremor in my hands and arms mentioned above vanished
About 3 weeks ago the muscular ache in my left leg started diminishing
significantly and today is almost completely gone.
About 1 week ago the night tremor in my hands and arms has come back
again at about the same magnitude as before.
That brings us to today April 25, 2006..
Today, overall I feel about the same as I did in the second month of
this ordeal, current symptoms today are:
1) Night time tremor and weakness in arms only that goes away when I
get out of bed or when I just fully awaken after lying in bed.
2) Twitching all over body sporadically throughout the day, especially
after I use a specific muscle, or hold a muscle in a specific position
for a while such as the position of my thumb on the steering wheel
when driving will cause it to twitch after a while.
3) More twitching in left leg and foot than anywhere else.
4) Buzzing in left leg usually after walking or running.
5) Twitching in bottom of left foot comes and goes now throughout the day now.
6) No perceptable weakness other than the fleeting night weakness in
my arms and hands mentioned in item 1 above.
7) No buzzing or twitching ever in right leg or bottom of foot.
Now before October 2005, I never had any of these symptoms ever in my
life, other than what everyone would consider a normal twitch of an
eyelid or calf muscle, I know the difference.
This stuff just came on over a period of a few months and has been
pretty consistent ever since then.
During all of the doctor visits, I was also prescribed 2mg of Requip
at my neurologists suggestion, it does little good for any of these
symptoms, but I don't kick my legs in my sleep anymore.
I'm on no other medicines and am perfectly normal both physically and
mentally and always have been.
My doctors think they have ruled out ALS, Parkinsons, and a few other
things like ferritin and copper issues. My blood presure and blood
sugar levels are normal. I have had numerous chemistry profiles run,
all normal as can be.
I have read about benign facsilation syndrome and it fits, but I of
course am worried that we might be overlooking something or it might
be just less common presentation of early ALS symptoms.
My mom died of familial ALS but her symptoms were not near as broad as
mine, and she had weakness at the initial onset, a little twitching,
and didn't complain of anything else in her entire 18 months of
I have these 3 additional efforts underway today..
1) I went to a genetic counselor for ALS Gene to be tested for the
SOD1 gene. My neurologist and me came to the conclusion that it
wouldn't be a bad idea even though he doesn't think I have ALS. I get
results back in about two weeks. I know all the ramifications of
unreliability of this test due to the low chance of my mothers ALS
even being caused by SOD1, but it won't hurt to get it done.
2) Am going to go to a Rhumatologist to get their opinion in a few
weeks, this is something I came up with since my primary care
physician didn't know what to do next.
3) Have a colonoscopy and endoscopy scheduled next month too, my
doctors suggestion due to a low serum iron count that appeared on one
of my lab tests, note the next lab test a week later was perfectly
Now my specific questions..
How does a person go from being perfectly normal to all of these
symptoms and the doctors tell you theres nothing wrong, it's really
hard to believe, something has to have changed to cause these symptoms
Do these symptoms line up with anything anyone has seen other than RLS
and Benign Fascilation Syndrome ?
Are there cases of ALS presenting this way in early stages ?
What other tests or specialists should I have my primary care
physician refer me to ?