Maybe Lyme, Maybe not...

Up until mid January of 2005, I was a healthy male of 35 years with no prior
major illnesses. Around December of 2004, I first noticed some
"twinge"-like sensations in my left temple and I experienced periodic eye
strain. I visited an optometrist, who found nothing other than myopia
(-1.50 in both eyes). She did off-handedly mention "scarring" in the back
of my right eye, as though from a past trauma.

In mid January, the twinge sensations continued and I had a CT scan (w/o
contrast) done, which proved negative. A week later, I awoke to my alarm
clock and when I suddenly shot my neck forard to look at it, I immediately
experienced sensations of whiplash --sudden stiffness in the neck with pain
when trying to turn to the left or right. The stiffness continued for a
couple days and gradually wore off, but was soon replaced by tingling in the
finger tips and the toes on both the right and left side, plus tinnitis.

I had an MRI done of the cervical spine which found a "small central disc
herniation at c3-4 without evidence of cord compression; a "minimal diffuse
disc bulge without compression" at c4-5; and a "minute central disc
protrusion without compression" at c5-6. This was likely all due to two car
accidents in which I had rear-ended vehicles (and I've been rear-ended
twice). The doctor, however, did NOT believe these neck injuries could be
causing my tingling in my toes. Still, he recommended an epidural steroid
injection in my neck.

As the days progressed, so did my worsening symptoms. The tingling soon
became heaviness and burning sensations throughout the arms and legs; soon
after being prescribed a weeklong dose of Prednisone, I partially lost my
sense of taste and smell; the lower-left side of my face and mouth
twitched,tingled and "pulled"; the tip of my tongue burned/tingled; I lost
sleep and weight with increased muscle twitching and being "jerked" awake; I
felt burning pain behind my nose and pain in my eyes when I tried to look
up,down,left or right, particularly in the morning; I had problems getting
food down as my mouth felt dry; and sometimes I'd notice a strange,
temporary redness on my left cheek that once or twice produced an itchy
"blister"; I developed lower-back pain that radiated into my
prostate/bladder area, had difficulty making bowel movements and felt a
frequent sensation of needing to urinate.

I was finally hospitalized for a few days to allow my doctor and the on-call
neurologist to run a battery of tests. A lumbar puncture, brain MRI, EEG,
EKG and a series of blood tests looking for Vitamin B12 deficiency, ANA/SED
rate levels and deficiencies were performed. A Multiple Sclerosis profile
was done on the CSF but it was normal (no O-bands). My protein, WBC and RBC
levels were elevated (45, 17 and 13, respectively) but they had attributed
this elevation to the fact that I had had the epidural steroid injection to
my neck only two days prior to my spinal tap.

After being discharged from the hospital, the symptoms seemed to get worse.
The burning sensations became more intense; my muscles in my legs and arms
seemed to feel tight and would not relax; I'd have twitching throughout my
body, including the head; and my vision began to worsen: my right eye
developed an increase in floaters and I began to "see" my heartbeat pulse
through my vision (an area of my vision would pulsate in time with my
heartbeat); afterimages would linger in my sight; and I'd see "boiling"
disturbances of light when staring at the sky or other bright light.

Over the course of all this, I've had a lumbar spine MRI (negative);
thoracic spine MRI (negative) three cervical spine MRI's, two of which were
with contrast (negative except the aforementioned slipped discs); a second
CT scan with contrast (negative); a second lumbar puncture (which showed
normal protein and WBC levels this time); two brain MRI's with contrast (the
latest of which was taken in late March --both were negative or
"unremarkable"). A "rheumatological screen" was performed and came out
negative; tests for Lyme Disease and heavy-metal poisoning also were
negative (lead and mercury); a specific set of DNA tests for Sjorgren's
Syndrome also turned out negative; A visual evoked potential test
(normal --90 ms for each eye); a somatosensory evoked potential on my legs
(normal);two EMG's (one for each side of my body --both normal).

I'm at a complete loss. I have never been sick on a scale like this
before --in fact I was rarely sick before this. Since the doctors can't
seem to find the cause, and because nearly all my symptoms have been
sensory-related, the inevitable suggestion has been that it's all
psychosomatic. I am frustrated by this conclusion, especially when one
considers my health history and normal psychological profile.

Right now, I'm being referred to a rheumatologist, though the neuro
suggested it might be a waste of time. I'm also scheduled to see an ENT who
specializes in taste/smell disorders. I'm going to physical therapy for my
disc bulges. Lastly, I've seen a neuro-opthalmologist who did not find
optic neuritis or any abnormalities other than the floaters and the
"beginnings of a cataract" in my right eye; and an ophthalmologist who
specializes in "dry eye" disorders who did diagnose me with "blepharitis,"
which I'm being treated for. But I have a suspicion that whatever is
causing my eye problems and other neurological symptoms is likely a more
global problem. One thing that interested me about the brain MRI's was that
in both cases, the doctors off-handedly noted a "prominent perivascular
space in the left inferior basal ganglia." When I pressed my neurologist(s)
about this, they said it's a normal occurrence and would have no bearing on
the large array of symptoms I suffer from. I'm not clear, however, if such
a "space" is normal for a man my age or if it typically signals something
else going on.

I realize a diagnosis over the Internet is impossible, so any open
speculation on my issue plus direction would be greatly appreciated. As of
this writing, my taste/smell issues wax and wane but are never at normal
levels; my sense of light touch is completely gone (the softness of petting
a cat; being able to discern sharp objects vs. dull; loss of sexual
sensation, etc.); and my vision and tinnitus symptoms remain unchanged. I
have not experienced the intense burning in my arms and legs in over a week,
thankfully, but wonder if that lull is merely transient, as the neck pain,
tingling in the hands/feet and face have again returned. After three months
and many tests and doctors (including a long drive to Cleveland), I feel no
closer to finding any answers.

-J


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