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Re: HLA-B27 negative
NorthCentralFL #253637 06/11/13 05:37 PM
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Originally Posted By: NorthCentralFL
I suppose you'd have to see and feel them in person to understand what I mean. I get comments on them constantly. frown

Maybe it would be worth seeing a dermatologist?

Re: HLA-B27 negative
NorthCentralFL #253644 06/11/13 06:43 PM
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Here is an excellent link discussing nail problems:

http://www.acponline.org/about_acp/chapters/mt/hit_the_nail.pdf

I have never been diagnosed with lichen planus, but my nails look similar to those photos. Lichen planus is an autoimmune inflammatory disorder. Well, that certainly sounds like it's in the same ballpark, right?

.

Re: HLA-B27 negative
NorthCentralFL #253654 06/11/13 07:38 PM
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Re: nails, I don't have any ridges but just lines under the nails. By horizontal I mean that they go across the nails. Since my rheumy took a good look at them and wasn't that interested or worried about them, I'm not either. I did talk to a friend who's psoriatic and she said her nails have similar lines, so that's why I thought they might be an early sign of that. Or not, hopefully... sometimes I joke that the health is gone but at least I've still got my looks wink

Re: HLA-B27 negative
NorthCentralFL #253658 06/11/13 07:48 PM
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WOW! Great link! I actually had a condition with my large left toe (same bad foot) that has taken three years to cure. It is still sensitive to pressure (even socks) but the condition of ridges and splitting has finally gotten healthier!

Re: HLA-B27 negative
Lizzie749 #253662 06/11/13 08:00 PM
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Originally Posted By: Lizzie749
sometimes I joke that the health is gone but at least I've still got my looks wink

LOL, love it!!!

Re: HLA-B27 negative
Lizzie749 #253666 06/11/13 08:09 PM
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Originally Posted By: Lizzie749
... sometimes I joke that the health is gone but at least I've still got my looks wink



LOL! Yep, and we are unique too! wink

Re: HLA-B27 negative
Tacitus #253711 06/12/13 02:22 PM
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Originally Posted By: Tacitus

Over 50% of AS+B27- presenting to the AS Middlesex Clinic, actually retested B27+; the serological test is highly flawed and many people who 'think' they are negative would become positive with proper (Fc or ELISA) testing.


Hi John,

Sorry that I missed this post! It is very informative. I was not aware of the flaws in the serological test. Sometimes I think about pursuing the best possible rheumatologist again to see if they will re-examine all of my symptoms, and maybe do more genetic testing, but then I realize that they wouldn't be able to treat my disorder anymore effectively regardless of what they found. I doubt that I am a good candidate for the new biologics because I can be prone to infection. However, the underlying mystery of this disorder does make one wonder about the specifics. I sure do wish they would put more money into research.

Thanks again John. Have a great day! smile

~ Cathy

Re: HLA-B27 negative
NorthCentralFL #253883 06/16/13 02:14 AM
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My daughter was the first diagnosed in her early 20s thanks to a sharp eye doc (multiple bouts of iritis since childhood) who sent her to the best rheumy at our teaching hospital. She was HLA-B27 negative. When this rheumy started seeing the rest of us, he said there was really no need to test the rest of us as she was negative; he felt we fell into the pool of folks who were negative on this test, but a quick look at our x-rays and MRIs told the real story. We've even had our blood work indicate no inflammation, even while LOOKING at a measurably swollen joint. My son's rheumy used to "love" to pull blood from him whenever he was healing from something broken...she claimed the boy had alien blood since he never (nor any of us) shows numbers outside the normal range.


Kim: finishing the PhD SOMETIME in 2013! Dx'd with Undifferentiated Spondyloropathy (officially!) in October 2010 and gastroperesis in August 2011, now adding Sjorgren's and VERTIGO to the mix. Mom to 1 daughter with AS (on FULL disability), and 2 sons with UDiff (1 a graphic designer-freelance and 1 an elite level soccer player). Taking Enbrel (Oct. 2012) and Sulfasalezine (spring? 2011)
Re: HLA-B27 negative
NorthCentralFL #253949 06/17/13 10:44 PM
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"Here is another odd feature of my systemic disorder. I had a tremendous amount of extra bone growth throughout my body during my most severe flare period at age 30. I used to have a cute gap between my top two front teeth, which closed due to all of the bone growth just above and to each side of them. "
NorthCentralFl -

I have a strange collarbone, where the right half is visibly much bigger than the left side. This came on slowly, but I know it wasn't this way in my teens, as I have photos showing the sides completely matching back then. My rheumy actually noticed it before I did. Since it doesn't seem to cause me any problems ( other than my necklaces don't hang evenly ) I pretty much ignore it. Last year, I noticed that a bony bump had developed on the end of the left collarbone. When the dr. X-rayed it, he asked me when I had I broken that left side? I said "never", and then he showed me the healed crack on the X-ray. So I too have some strange bone growth going on that has no explanation. As long as it doesn't hurt, I can just accept that it's another weird and wonderful symptom of our dear disease.


Psoriatic Arthritis since 2000. Failed Enbrel and Humira, now on Cimzia and methotrexate.
Re: HLA-B27 negative
BeckySue #253954 06/18/13 01:36 AM
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Originally Posted By: BeckySue
So I too have some strange bone growth going on that has no explanation. As long as it doesn't hurt, I can just accept that it's another weird and wonderful symptom of our dear disease.


Yes, my anomalous first rib bone growth is on the left too. Very interesting.

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