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Home > Archive > Lupus Support > October 2005 > PLEASE HELP tests showing negative
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PLEASE HELP tests showing negative
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| zacdesai@ananzi.co.za 2005-10-01, 8:36 am |
| Hi,
Very briefly, I started experiencing pains and problems with my joints
earlier this yr.Prior to it starting I was trying to get grips with a
neck and lower back problem diagnosed as being a pinched nerve.Anyway I
was taking muscle relaxants for the spasms and 1 day noticed my bones
had a dry sorta feeling.If i shrugged my shoulders could feel joints
clicking.Thought it was the meds and went off it.Symtoms subsided but
came back recently.Had sharp pains sometimes like pricking needles in
my knees, big, toes, elbows & fingers.Also I cant quite describe the
feeling but the muscles in arms and legs sometime feel as if
rubbery-like and seems like sensation inside the muscles are less. I
dont know whats goin on - went for some tests ESR, Haemoglobin, Urea,
s-c reactive protein, Rheumatoid factor, anti-nuclear factor. And my GP
says all looks fine. Please help me with some info! I started this
"dong" diet fish & veggies - pain seems to have went down but some
symtoms still there and I think im losing weight. Could somebody please
shed some light on whats goin on?
I thank God for everybodies help - gives a glimmer of hope and pray
that all of you find help and get well SOON. Thanks!
Zak
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| William R Thompson 2005-10-01, 8:36 am |
| <zacdesai@ananzi.co.za> wrote:
> Hi,
>
> Very briefly, I started experiencing pains and problems with my joints
> earlier this yr.Prior to it starting I was trying to get grips with a
> neck and lower back problem diagnosed as being a pinched nerve.Anyway I
> was taking muscle relaxants for the spasms and 1 day noticed my bones
> had a dry sorta feeling.If i shrugged my shoulders could feel joints
> clicking.Thought it was the meds and went off it.Symtoms subsided but
> came back recently.Had sharp pains sometimes like pricking needles in
> my knees, big, toes, elbows & fingers.Also I cant quite describe the
> feeling but the muscles in arms and legs sometime feel as if
> rubbery-like and seems like sensation inside the muscles are less. I
> dont know whats goin on - went for some tests ESR, Haemoglobin, Urea,
> s-c reactive protein, Rheumatoid factor, anti-nuclear factor. And my GP
> says all looks fine. Please help me with some info! I started this
> "dong" diet fish & veggies - pain seems to have went down but some
> symtoms still there and I think im losing weight. Could somebody please
> shed some light on whats goin on?
I'm in the same boat as you (the Titanic, I think): all my tests results
come back negative, but I still have lupus-like symptoms.
Someone better-informed than me will give you this address:
http://www.northeastlupus.org.uk/
which is a great place to find information on lupus.
What medication(s) do you take? Some drugs can cause lupus symptoms.
Lupus flares can be provoked by quite a few things. Ultraviolet light
(in sunlight and fluorescent lights) can do it. So can alcohol and stress.
Do you keep a diary of what you do/eat/drink and of when your
problems grow worse? In hindsight, is there anything that happened before
all of your flares, such as spending an unusually long time in the sun?
Did the doctor say your problems were psychosomatic? I swear, that
particular "diagnosis" ought to be on any list of lupus symptoms.
--Bill Thompson
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| In article <KFv%e.6581$vw6.1383@newsread1.news.atl.earthlink.net>,
William R Thompson <wrthomps@ix.netcom.com> wrote
[]
>In hindsight, is there anything that happened before
>all of your flares, such as spending an unusually long time in the sun?
>
- a day or three beforehand, rather than the same afternoon.
--
Andy Taylor [Chair, N E Lupus Group]
See http://www.northeastlupus.org.uk for more!
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| Candi Bowen 2005-10-06, 10:48 pm |
| Hi there, I've been there too. In my case, it eventually turned up anti-RANA
& anti-cardiolipin positive. The anti-RANA test isn't done routinely any
more & is more of a marker for RA than lupus so I have Rhupus, but I've also
read that the anti-RANA is an older test for anti-RO. Here's some info about
other tests that can be done. This is according to Dr. Daniel Green. This is
old info & I believe that there are even MORE tests that can be done. Many
of the antibodies fluctuate, & not necessarily according to disease
activity, so need to be repeated often if your doc suspects connective
tissue disease. I was lucky in a way; I dated my doc & we almost married, so
he had my medical records for many years & actually BELIEVED me. Also, if
you're photosensitive you may not have a flare for several months, not
necessarily a few days. Good luck to you.
Candi
There are other tests if a person has a negative ANA and is still suspected
of having lupus; for unknown reasons, in a small amount of patients, 1) the
old LE-cell prep test will be positive; 2) there are new markers for lupus -
Anti-MA, Anti-Ki, Anti-Me (undifferentiated CTD); 3) Anti-nRNP &
anti-u1-RNP (MCTD); 4) Anti-centromere (CREST); 5) Anti-PCNA (common in
SLE); & 6) Anti-HSP90 (specific for MCTD), 7) anti-cardiolipin, 8) the lupus
band test, highly conclusive if the photosensitive rash is biopsied, 9)
anti-EA (Ro, La, Sm, RNP)
Per Dr. Daniel Wallace November 26, 1997
Q: How is it possible that a person can be very ill with lupus, yet lab
tests can come back as normal?
A: 98% with sle have a positive ANA but many lupus patients with non-organ
threatening disease have normal blood testing otherwise but do not feel well
its difficult, but there are specialized tests relating to specific symptoms
such as bone scanning or a lupus band test that can be done to ascertain
whether a specific complaint is from lupus.
Q: Why does the ANA fluctuate so much...how can you be in a flare and have a
negative ANA? And if you have 4 out of the 11 lupus criteria without a
positive ANA...why do some drs not diagnose you with sle?
A: A negative ANA is uncommon. It is seen in the following circumstances:
discoid lupus, antiphospholipid syndrome, or after high doses of
chemotherapy or steroids. If these circumstances do not apply, consider that
lupus may not be the correct diagnosis. ANAs fluctuate because it is not a
standardized test and what is positive in one lab is not necessarily the
same titer in another. ANA levels are only a rough correlate.
Letter from Dr. Peter Schur (Professor of Medicine; Brigham and Women's
Hospital) December 12, 1995
"only 14 of 10,000 lupus patients had a negative ANA. Symptoms such as
photosensitivity, nasal ulcers, pleurisy, joint pain with swelling, and
having a bald spot makes one strongly suspect lupus. Therefore, I would
agree with your doctor in saying that you probably have lupus and treat you
accordingly."
There is a new test available to pick up the suspected 20% of people with
lupus who have a negative ANA.
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| zacdesai@ananzi.co.za 2005-10-06, 10:48 pm |
| Thanks - appreciate the time & help.
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| zacdesai@ananzi.co.za wrote:
> Very briefly, I started experiencing pains and problems with my joints
> earlier this yr.Prior to it starting I was trying to get grips with a
> neck and lower back problem diagnosed as being a pinched nerve.Anyway I
> was taking muscle relaxants for the spasms and 1 day noticed my bones
> had a dry sorta feeling.If i shrugged my shoulders could feel joints
> clicking.Thought it was the meds and went off it.Symtoms subsided but
> came back recently.Had sharp pains sometimes like pricking needles in
> my knees, big, toes, elbows & fingers.Also I cant quite describe the
> feeling but the muscles in arms and legs sometime feel as if
> rubbery-like and seems like sensation inside the muscles are less. I
> dont know whats goin on - went for some tests ESR, Haemoglobin, Urea,
> s-c reactive protein, Rheumatoid factor, anti-nuclear factor. And my GP
> says all looks fine. Please help me with some info! I started this
> "dong" diet fish & veggies - pain seems to have went down but some
> symtoms still there and I think im losing weight. Could somebody please
> shed some light on whats goin on?
You posted something different (losing weight, panic attacks, pain in my
ankles,knees and shins
while walking, depression, fatigue and more) to the lyme newsgroup a few
years ago and they all thought it was lyme.
Here, they're helping you in case it's lupus.
Clicking sounds like osteoarthritis to me, but your post to the lyme
newsgroup mentioned that you're a student.
I don't know your age...nor how young a person can be to have
osteoarthritis.
I don't want to discourage you from posting here, but can we get the whole
story, please?
What's your age? Are you on an anti-anxiety medication? If not, why not?
Gender?
And how much did you weigh back then? And how much do you weigh now? And
your height..
Is weight part of the problem?
The more you tell us, the better we might be able to help sort things out.
Are you caucasian? There might be illnesses to which some south africans
are more prone to getting that we don't know about, but your doctor should
know about.
J
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