Neurological Disorders - Sudden onset of neuro problems, no answers

Author

Sudden onset of neuro problems, no answers

Jordan Powell

2005-04-14, 8:42 am

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 the Cleveland Clinic),
I feel no closer to finding any answers.

Repeating Rifle

2005-04-14, 8:42 am

in article 115rrub7tucekf1@corp.supernews.com, Jordan Powell at
lonewolf@one.three.net wrote on 4/14/05 9:21 PM:

> 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.

<snip>

I can sympathize with your situation but am in no position to offer any
wisdom. I have some of the symptoms you have, but my case is also quite
different in many ways.

Good luck in seeking a resolution. Please keep us informed about your
travels in you medical limbo.

Bill

Mortgage.Author

2005-04-21, 8:54 am

"Repeating Rifle" <salmonegg@sbcglobal.net> wrote in message
news:BE83465D.37A89%salmonegg@sbcglobal.net...
: in article 115rrub7tucekf1@corp.supernews.com, Jordan Powell at
: lonewolf@one.three.net wrote on 4/14/05 9:21 PM:
:
: > 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.
:
: <snip>
:
: I can sympathize with your situation but am in no position to offer any
: wisdom. I have some of the symptoms you have, but my case is also quite
: different in many ways.
:
: Good luck in seeking a resolution. Please keep us informed about your
: travels in you medical limbo.
:
: Bill
:

Hello,
I also sympathize with you. I was a happy, successful, high energy
workaholic until I started getting the symptoms you describe. That was 5
years ago. I still have problems. Isn't it maddening? My daughters call
it "symptom de jour", never knowing how I'll feel in any given day. I have
been diagnosed with M.S. due to a few small lesions on 3 MRIs (but had no
'bands'), and am doing very well on medicine. I also have disc problems,
Sjogrens, and occasional Optic Neuritis, but none of those really explain
the neuropathy. What have the doctors diagnosed? Are you on any medicine?
Do you have much pain? Let us know what you learn. If you're like me, you
can cope with anything, if you know the truth. It is hard not to know what
you're dealing with. And keep a diary, like you are doing. If you ever
need to file for disability, the diary could be a help.
Rebecca, Nashville

http://home.bellsouth.net/p/PWP-Messianic

Jordan Powell

2005-04-21, 10:53 pm

"Mortgage.Author" <drsterling@bellsouth.net> wrote in message
news:KOF9e.85198$UW6.71158@bignews5.bellsouth.net...
> I also sympathize with you. I was a happy, successful, high energy
> workaholic until I started getting the symptoms you describe. That was 5
> years ago. I still have problems. Isn't it maddening? My daughters call
> it "symptom de jour", never knowing how I'll feel in any given day. I
> have
> been diagnosed with M.S. due to a few small lesions on 3 MRIs (but had no
> 'bands'), and am doing very well on medicine. I also have disc problems,
> Sjogrens, and occasional Optic Neuritis, but none of those really explain
> the neuropathy. What have the doctors diagnosed? Are you on any
> medicine?
> Do you have much pain? Let us know what you learn. If you're like me,
> you
> can cope with anything, if you know the truth. It is hard not to know
> what
> you're dealing with. And keep a diary, like you are doing. If you ever
> need to file for disability, the diary could be a help.
> Rebecca, Nashville
>
> http://home.bellsouth.net/p/PWP-Messianic
>
>

Hi Rebecca:

I haven't been diagnosed with anything, unfortunately. Since nothing is
showing up on tests, they are assuming that all my systems are being
generated by anxiety...which is the most frustrating aspect of this.
Suddenly when something happens to me physically, I'm a
hypochondriac....which is ridiculous. I've taken maybe 3 or 4 sick days in
8 years. I don't have a pattern of conjuring symptoms. The reality is that
I've unfortunately run into a series of doctors who are all running through
their normal game book for these types of symptoms, but none of them seems
willing to look outside the box.

How long did it take for your diagnosis? Did you have MRI's done 5 years
ago, when they couldn't find anything? When did you lesions start showing
up on an MRI? How long did it take from the onset of your symptoms for
doctors to get a diagnosis? Did your tingling occur simultaneously on all
four limbs or did the areas vary from one time to another? My doctors have
said they've "ruled out MS."

One thing that has been suggested in my case by others is the possibility of
Lyme disease...just based on the fact that I've been out of the country and
out of state as recently as last year...and I've hiked in the woods out of
state. But I don't remember ever having a rash (though I know that less
than half of those who are bitten realize they've been bitten or see a
rash). Lyme also can cause brain lesions and is reversible *IF* doctors are
willing to work with you in administering the appropriate antibiotics. I
can only hope that's what it is..because it can be completely reversible if
treated quickly.

Mortgage.Author

2005-04-27, 5:58 pm

"Jordan Powell" <lonewolf@one.three.net> wrote in message
news:116gd2t2rv31qb0@corp.supernews.com...
:
: "Mortgage.Author" <drsterling@bellsouth.net> wrote in message
: news:KOF9e.85198$UW6.71158@bignews5.bellsouth.net...

: >> Hello,
: > I also sympathize with you. I was a happy, successful, high energy
: > workaholic until I started getting the symptoms you describe. That was
5
: > years ago. I still have problems. Isn't it maddening? My daughters
call
: > it "symptom de jour", never knowing how I'll feel in any given day. I
: > have
: > been diagnosed with M.S. due to a few small lesions on 3 MRIs (but had
no
: > 'bands'), and am doing very well on medicine. I also have disc
problems,
: > Sjogrens, and occasional Optic Neuritis, but none of those really
explain
: > the neuropathy. What have the doctors diagnosed? Are you on any
: > medicine?
: > Do you have much pain? Let us know what you learn. If you're like me,
: > you
: > can cope with anything, if you know the truth. It is hard not to know
: > what
: > you're dealing with. And keep a diary, like you are doing. If you ever
: > need to file for disability, the diary could be a help.
: > Rebecca, Nashville
: >
: > http://home.bellsouth.net/p/PWP-Messianic
: >
: >
:
: Hi Rebecca:
:
: I haven't been diagnosed with anything, unfortunately. Since nothing is
: showing up on tests, they are assuming that all my systems are being
: generated by anxiety...which is the most frustrating aspect of this.
: Suddenly when something happens to me physically, I'm a
: hypochondriac....which is ridiculous. I've taken maybe 3 or 4 sick days
in
: 8 years. I don't have a pattern of conjuring symptoms. The reality is
that
: I've unfortunately run into a series of doctors who are all running
through
: their normal game book for these types of symptoms, but none of them seems
: willing to look outside the box.

~ It is really aggravating when the doctor's can't pinpoint the cause, so
they let you assume you're "crazy". You're not crazy, your body is telling
you that something is wrong.
:
: How long did it take for your diagnosis? Did you have MRI's done 5 years
: ago, when they couldn't find anything? When did you lesions start showing
: up on an MRI? How long did it take from the onset of your symptoms for
: doctors to get a diagnosis? Did your tingling occur simultaneously on
all
: four limbs or did the areas vary from one time to another? My doctors
have
: said they've "ruled out MS."

~ Looking back on it, I must have had it since I was 31. I can remember a
very distinct time when my left leg "quit" for a few days. Then I started
getting clumsy. And over the years, I had all the symptoms, including optic
neuritis, spasms and tremors, and even a bout with incontinence. But all
the syptoms came and went and I never had a clear-cut problem to tell any
doctor. So I ignored it, telling myself I was just overworked. I had a
very severe fall in the spring of 2000. Eventually a year later, they did
an MRI showing the lesions. I have never had tingling on all four limbs -
just one at a time, and most generally on my left (weaker) side.
:
: One thing that has been suggested in my case by others is the possibility
of
: Lyme disease...just based on the fact that I've been out of the country
and
: out of state as recently as last year...and I've hiked in the woods out of
: state. But I don't remember ever having a rash (though I know that less
: than half of those who are bitten realize they've been bitten or see a
: rash). Lyme also can cause brain lesions and is reversible *IF* doctors
are
: willing to work with you in administering the appropriate antibiotics. I
: can only hope that's what it is..because it can be completely reversible
if
: treated quickly.
:
~ Yes, I hope you do just have Lyme Disease, if it is manageable. I saw a
deer tick once (pointed out by an expert) and they are so small, how could a
person ever know they had been bitten? Tell us how you're doing. Oh, and
if you haven't visited the MS newsgroup, you are officially invited. They
know about everything and are so kind. I think the address is
alt.support.mult-sclerosis. You can do a search function and find it.

R

Jerry Story

2005-05-01, 5:58 pm

According to what seems to the the most common NH view, diagnosis is
the least important thing. And at least one NH practitioner goes so
far as to say that knowledge of cause is not important because all
diseases have the same cause.

In any case when the legit doctors don't have a clue, you might want to
try the NH doctors. They have a much higher rate of success. (For
example recovery from heart disease is routine with NH doctors;
probably impossible according to legit doctors.)