ankylosing spondylitis diagnosis

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malfleur - 01 Mar 2006 22:11 GMT

I just got this diagnosis yesterday from my Rhuemy. Positive HLA B27
and symptoms of chest pain when breathing, lots of soreness and
stiffness in joints, possible IBD. I'm a 47 year old female, so I'm a
little surprised at this diagnosis. I thought for sure I had Lupus.
It might be I have that too, still waiting on that test.

I have a few questions.

My CRP and Sed Rates were low. Does this mean the disease is in
remission for me? How do they determine whether the disease is active
or not?

I've got a diagnosis, so what should I do next? Ask for pysical
therapy? Referral to an eye doctor? Ask for a work up of my heart?
Ask for MRI to see how far the disease has progressed?

I think I'm over the shock of the diagnosis. It seems like I probably
have a pretty mild case and it looks like if I'm dilligent with
exercise I can keep my mobility, or am I being overly optomistic?

Anyone else get fatigue and brain fog with this disorder? I seem to
have a lot of that. Does anything help?

Thanks all!

Nancy

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Harvey R. Stone - 02 Mar 2006 16:29 GMT

>I just got this diagnosis yesterday from my Rhuemy. Positive HLA B27
> and symptoms of chest pain when breathing, lots of soreness and
[quoted text clipped - 22 lines]
>
> Nancy

Hi Nancy, I am cross posting your question to alt.support.arthritis in
hopes you get good answers.
Harv

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malfleur - 02 Mar 2006 19:09 GMT

Thanks much Harvey! I'll check over there.

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Mary Z - 03 Mar 2006 02:04 GMT

>Thanks much Harvey! I'll check over there.

One of the best resources on the web is KickAS, they have some helpful
forums and tons of information.
http://www.kickas.org/index.html

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thelongestday320@aol.com - 06 Mar 2006 21:45 GMT

What about this site

http://www.spondylitis.org/

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Charrlygrl1 - 10 Mar 2006 19:50 GMT

I just love spondylitis.org-ck out the message boards there.
I have AS too: <waving>

Char

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Harvey R. Stone - 02 Mar 2006 16:39 GMT

>I just got this diagnosis yesterday from my Rhuemy. Positive HLA B27
> and symptoms of chest pain when breathing, lots of soreness and
[quoted text clipped - 7 lines]
> for me? How do they determine whether the disease is active
> or not?

It means that you do not have much active inflammation and that is a good
sign. IMO,,, you need to take a disease modifying
drug along with anything your RD has you taking. You need to have x rays
or mri to compair to your condition at a later date to prove to your RD that
you have some form of inflam.arth.,,,, maybe PA with the hla-b27 but your
RD knows all of this and your wheel needs to squeak for a little
oiling....:-)

> I've got a diagnosis, so what should I do next? Ask for pysical
> therapy? Referral to an eye doctor? Ask for a work up of my heart?
> Ask for MRI to see how far the disease has progressed?

Yes

> I think I'm over the shock of the diagnosis. It seems like I probably
> have a pretty mild case and it looks like if I'm dilligent with
[quoted text clipped - 6 lines]
>
> Nancy

Oh yes,,, when my rib cage began to bother me all the time, 3 well placed
steroid shots put out the fire. Expect help from your doctor and if you do
not get it,,,,, get another doctor. The time to jump on your problems is
now.
Harv

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Charrlygrl1 - 10 Mar 2006 19:58 GMT

Hi Nancy!!!
I have AS as well, and it truly does suck. www.spondylitis.org is just
wonderful, as are the message boards there.
Don't worry about the low sed rate. My MRIs showed bad erosions in both
wrists and some in the SI joints of my back, and my sed rate was NEVER
high. At spondylitis.org you will read that there are only about 70% of
those with AS that have high sed rates....in 30% the sed rate is not
elevated at all. This often adds to the problem that most women have
getting diagnosed with AS. It is a disease that mostly affects men
(2/3-men 1/3 women). In women AS often attacks the peripheral joints
more than it does in men. In men, it mostly severely attacks the spine.
You need to start treatment now. This usually means starting out with
an NSAID (non steroidal anti inflammatory), and a DMARD (disease
modifying agent). Be prepared: it may take a while to hit on the right
med or combo of meds for you. I am currently on Enbrel, Methotrexate,
Azulfidine, Prednisne, Clinoril (NSAID) and a few others.
The fatigue and brain fog are not uncommon with AS. Unfortunately, it
is not uncommon for fibromyalgia to kick in a short while after the AS
diag. : (
Iritis is very common with AS, so a visit to the eye doctor may not be
out of order. SInce untreated iritis can cause blindness, I would not
put it off, if you are currently having problems with your eyes.
You will see me on the message boards at the above site, any of us
there would be happy to answer any other questions.
Good luck to you!!
Charlene

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