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Home > Archive > Neurological Disorders > July 2006 > NPH Possible with negative MRI?
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NPH Possible with negative MRI?
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| Sheldon Brown 2006-07-06, 4:26 pm |
| I have been under the care of a neurologist since October of last
year, still no definitive diagnosis despite 7 MRIs, CT scan, EMG test
and Lumbar Puncture.
I suffer discoordination of my legs, have had a few falls, and walk
with a wide, awkward gait, and balance problems particularly associated
with turing around or getting up from a chair.
The lumbar puncture revealed some olioclonal bands, a sign of possble
inflammation, but nothing has shown up in any of the MRIs aside from a
fatty tumor in my right thigh.
I've had MRIs of my brain with and without contrast; also of the upper
and lower spine, hip and right thigh (the problem seems to be slightly
worse in the right leg.
My neurologist has me on steroids, which seem to be helping a bit.
The peculiar thing is the lumbar puncture...for two days after the LP,
my condition was considerably improved, which I had not expected at
all. Subsequently someone had suggested that it might be NPH, which I
had never heard of.
As it happens, I have had slight incontinence issues, mainly urgency,
but occasional leakage, and had never made any connection.
>From the reading I've done, this suggests that NPH is a possibility,
but my neurologist says not, mainly because my gait isn't as bad as
what he associates with NPH, and because there's no sign in the MRIs.
What I'm wondering is if it would necessarily always show up in an MRI,
and if perhaps I just have a mild/early case.
Thanks in advance for any information.
I hate to second guess my neurologist, because I believe he's highly
competent and I like him, but nobody knows everything...
Sheldon Brown
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| x-no-archive: yes
Sheldon Brown wrote:
> I have been under the care of a neurologist since October of last
> year, still no definitive diagnosis despite 7 MRIs, CT scan, EMG test
> and Lumbar Puncture.
>
> I suffer discoordination of my legs, have had a few falls, and walk
> with a wide, awkward gait, and balance problems particularly associated
> with turing around or getting up from a chair.
>
> The lumbar puncture revealed some olioclonal bands, a sign of possble
> inflammation, but nothing has shown up in any of the MRIs aside from a
> fatty tumor in my right thigh.
>
> I've had MRIs of my brain with and without contrast; also of the upper
> and lower spine, hip and right thigh (the problem seems to be slightly
> worse in the right leg.
>
> My neurologist has me on steroids, which seem to be helping a bit. Ann Neurol. 1990 Dec;28(6):739-44. Related Articles, Links
> The peculiar thing is the lumbar puncture...for two days after the LP,
> my condition was considerably improved, which I had not expected at
> all. Subsequently someone had suggested that it might be NPH, which I
> had never heard of.
>
> As it happens, I have had slight incontinence issues, mainly urgency,
> but occasional leakage, and had never made any connection.
>
> but my neurologist says not, mainly because my gait isn't as bad as
> what he associates with NPH, and because there's no sign in the MRIs.
>
> What I'm wondering is if it would necessarily always show up in an MRI,
> and if perhaps I just have a mild/early case.
>
> Thanks in advance for any information.
>
> I hate to second guess my neurologist, because I believe he's highly
> competent and I like him, but nobody knows everything...
>
> Sheldon Brown
>
Was your spinal fluid tested by Western Blot and PCR for possible
neuroborreliosis? Or for antibodies bound up in immune complexes?
I'm not saying this is what you have, but it is something that can
produce all the symptoms you describe.
Cerebrospinal fluid immune complexes in patients exposed to Borrelia
burgdorferi: detection of Borrelia-specific and -nonspecific complexes.
Coyle PK, Schutzer SE, Belman AL, Krupp LB, Golightly MG.
Department of Neurology, State university of New York, Stony Brook
11794.
We analyzed cerebrospinal fluid (CSF) from 32 patients with
neurological symptoms and evidence of Borrelia burgdorferi infection (29
were seropositive as determined by enzyme-linked immunosorbent assay, 2
were cell-mediated immune positive, and 1 had been seropositive as shown
by enzyme-linked immunosorbent assay 9 months previously). CSF immune
complexes were found in 22 (69%) of 32 patients; in 18, there was
sufficient sample to isolate immune complexes. By enzyme-linked
immunosorbent assay, isolated immune complexes from 10 of these 18
patients contained antibody specific for B. burgdorferi antigens. The
isotypes were IgG (n = 8), IgM (n = 3), and IgA (n = 2). By immunoblot,
these antibodies were directed against B. burgdorferi 41-kDa antigen and
occasionally against the 33- and 17-kDa antigens. Anti-B. burgdorferi
IgM was present in patients with acute neurological symptoms, was
predominantly complexed rather than free, and decreased with clinical
recovery in the one serial study. Three patients were nonreactive for
free CSF antibodies, but had complexed antibodies to the organism. The
preliminary finding of specific B. burgdorferi components in immune
complexes in CSF suggests an active process triggered by the organism,
even in the absence of other CSF abnormalities.
PMID: 2285261 [PubMed - indexed for MEDLINE]
>
Susan
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| Sheldon Brown 2006-07-07, 4:25 pm |
|
Susan wrote:
> Was your spinal fluid tested by Western Blot and PCR for possible
> neuroborreliosis? Or for antibodies bound up in immune complexes?
He did say he tested for Lyme disease, came up negative..
I'm afraid I'm not up on the high-level medical terminology. He did
mention that there were indications of inflammation in the fluid,
that's what led him to prescribe Prednisone (steroid.)
He had a lot of fluid drawn, for 6 different tests as I recall.
> I'm not saying this is what you have, but it is something that can
> produce all the symptoms you describe.
Thanks! I'll discuss this with my neurologist when I see him later
this week.
All the best,
Sheldon
> Cerebrospinal fluid immune complexes in patients exposed to Borrelia
> burgdorferi: detection of Borrelia-specific and -nonspecific complexes.
>
> Coyle PK, Schutzer SE, Belman AL, Krupp LB, Golightly MG.
>
> Department of Neurology, State university of New York, Stony Brook
> 11794.
>
> We analyzed cerebrospinal fluid (CSF) from 32 patients with
> neurological symptoms and evidence of Borrelia burgdorferi infection (29
> were seropositive as determined by enzyme-linked immunosorbent assay, 2
> were cell-mediated immune positive, and 1 had been seropositive as shown
> by enzyme-linked immunosorbent assay 9 months previously). CSF immune
> complexes were found in 22 (69%) of 32 patients; in 18, there was
> sufficient sample to isolate immune complexes. By enzyme-linked
> immunosorbent assay, isolated immune complexes from 10 of these 18
> patients contained antibody specific for B. burgdorferi antigens. The
> isotypes were IgG (n = 8), IgM (n = 3), and IgA (n = 2). By immunoblot,
> these antibodies were directed against B. burgdorferi 41-kDa antigen and
> occasionally against the 33- and 17-kDa antigens. Anti-B. burgdorferi
> IgM was present in patients with acute neurological symptoms, was
> predominantly complexed rather than free, and decreased with clinical
> recovery in the one serial study. Three patients were nonreactive for
> free CSF antibodies, but had complexed antibodies to the organism. The
> preliminary finding of specific B. burgdorferi components in immune
> complexes in CSF suggests an active process triggered by the organism,
> even in the absence of other CSF abnormalities.
>
> PMID: 2285261 [PubMed - indexed for MEDLINE]
>
> Susan
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>
> He did say he tested for Lyme disease, came up negative..
> ___________
Look into this a bit more. Lyme is a CLINICAL DIAGNOSIS. No test can
rule out Lyme disease 100%. And, in fact, to be diagnosed you do not
have to have a positive antibody test.
The standard tests are antibody tests only. If the test is given too
early...false negative. If given to late...false negative. If given
after steriods...false negative. Even 30% of patients dont make
antibodies to this illness.
It also depends on which lab you are using. Many labs (and Dr.'s) think
that a person is required to have 5 bands on a Western Blot to be
diagnosed with the illness. This is not accurate. 5 bands are required
to be tracked in CDC stats but not to be diagnosed.
Some good resources are: LymeNet at http://www.lymenet.org and the
International Lyme Foundation--or ilads for short: http://www.ilads.org
Kara Tyson
Lyme Disease Support Group of AL
Mobile Chapter
Director
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| Is the same true for a Rickettsia test?
"Kara" <alabamalyme@usa.com> wrote in message
news:1152503690.959742.190240@s13g2000cwa.googlegroups.com...
>
> Look into this a bit more. Lyme is a CLINICAL DIAGNOSIS. No test can
> rule out Lyme disease 100%. And, in fact, to be diagnosed you do not
> have to have a positive antibody test.
>
> The standard tests are antibody tests only. If the test is given too
> early...false negative. If given to late...false negative. If given
> after steriods...false negative. Even 30% of patients dont make
> antibodies to this illness.
>
> It also depends on which lab you are using. Many labs (and Dr.'s) think
> that a person is required to have 5 bands on a Western Blot to be
> diagnosed with the illness. This is not accurate. 5 bands are required
> to be tracked in CDC stats but not to be diagnosed.
>
> Some good resources are: LymeNet at http://www.lymenet.org and the
> International Lyme Foundation--or ilads for short: http://www.ilads.org
>
> Kara Tyson
> Lyme Disease Support Group of AL
> Mobile Chapter
> Director
>
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M wrote:
> Is the same true for a Rickettsia test?
>
_____________
There is a certain % in fallibility in all tests. There is NO test that
is 100% accurate.
However, the Lyme tests are notorious for being unreliable. You might
want to call Igenex Labs and ask them. They are a lab that specialize
in tick borne illnesses. Their web site is http://www.igenex.com
There are over 300 strains of Lyme disease. How they affect an
individual can vary from slight arthritis to heart damage. It just
depends. It also depends on how many tick diseases a person has--many
Lyme patients have more than one.
Kara
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| x-no-archive: yes
Kara wrote:
> M wrote:
>
>
> _____________
> There is a certain % in fallibility in all tests. There is NO test that
> is 100% accurate.
>
> However, the Lyme tests are notorious for being unreliable. You might
> want to call Igenex Labs and ask them. They are a lab that specialize
> in tick borne illnesses. Their web site is http://www.igenex.com
They don't have a completely clean record for reliability, either.
Remember their bogus LUAT?
I don't see any reason to recommend them over MDL in NJ or even most
commercial labs with a doctor's order to report all bands on a Western
blot. I've always gotten accurate and comparable results from Labcorp,
Quest as compared to my MDL and, years ago, IGeneX tests.
Susan
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[vbcol=seagreen]
>
> They don't have a completely clean record for reliability, either.
> Remember their bogus LUAT?
________
The LUAT was never bogus. However, it has been updated and now is the
Lyme Antigen test. You will never ever get the infectious disease
people to recognize any new test for Lyme or any disease that may
compete with HIV as the cash cow.
At least with Igenex you know that certified lab techs are handling
your samples. Quest hires people off the streets--literally who have no
experiance. I used to work for ATT and when we had a layoff Quest hired
secretaries as lab techs.
>
So far as accuracy I have an ex boyfriend who received from Labcorp his
pregnancy results!
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| x-no-archive: yes
Kara wrote:
___
> The LUAT was never bogus. However, it has been updated and now is the
> Lyme Antigen test. You will never ever get the infectious disease
> people to recognize any new test for Lyme or any disease that may
> compete with HIV as the cash cow.
It sure was bogus, try to get them to name the reagent that allegedly
became unavailable just when it was proven to be crap. Not only
Klempner proved it, some LLMDs got curious and did their own secret
sample division and got wildly divergent results.
>
> At least with Igenex you know that certified lab techs are handling
> your samples. Quest hires people off the streets--literally who have no
> experiance. I used to work for ATT and when we had a layoff Quest hired
> secretaries as lab techs.
I got indentical results from Quest and Labcorp as I did from IGeneX on
the two occasions my serum was run simultaneously.
>
> So far as accuracy I have an ex boyfriend who received from Labcorp his
> pregnancy results!
>
And lots of folks got bogus LUAT results from IGeneX.
Susan
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| x-no-archive: yes
Kara wrote:
> Believe what you wish.
>
I didn't need your permission.
Susan
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