|
Forums33
Topics44,197
Posts519,915
Members14,168
| |
Most Online3,221 Oct 6th, 2025
|
|
Administrator/owner:
John (Dragonslayer)
Administrator:
Melinda (mig)
WebAdmin:
Timo (Timo)
Administrator:
Brad (wolverinefan)
Moderators:
· Tim (Dotyisle)
· Chelsea (Kiwi)
· Megan (Megan)
· Wendy (WendyR)
· John (Cheerful)
· Chris (fyrfytr187)
|
|
If you want to use this QR code (Quick Response code) just save the image and paste it where you want. You can even print it and use it that way. Coffee cups, T-Shirts etc would all be good for the QR code.
|
|
|
|
Joined: Oct 2013
Posts: 6
New_Member
|
OP
New_Member
Joined: Oct 2013
Posts: 6 |
How many of you were Hla-b27 and c reactive protein negative and were still diagnosed with AS ?? I just got my latest blood work results back from my GP. everything is " normal " as usual. I have had these tests a few times over the years always the same result. I have a appointment to see the rheumatologist in a month ( This is the first time for me at the rhumy ) I have had these symptoms for years, and have been getting the run around like Nothing is really wrong because it's not showing up in the blood test. Now that this has been going on for so long (Like 10 years) he is finally sending me to the Rhumy. I am worried that the rheumatologist is just going to broom me out the door like the rest because of the normal blood work!
|
|
|
|
|
Joined: Aug 2013
Posts: 215
Second_Degree_AS_Kicker
|
Second_Degree_AS_Kicker
Joined: Aug 2013
Posts: 215 |
I am being treated and I have all negative blood work and I'm b27 negative. My dr thought I had as after a xray showed sacroiliac scarring, but when the mri did not show the scarring, he changed the diagnosis to ra. I think I have as by itself or as and ra, but not just ra. I'm currently on sulfasalzine and mobic for meds. I'm also going to a llmd soon to rule out lyme, but I really doubt it's lyme due to the area I live in and the fact that I spent a lot of time indoors before i began having symptoms.
Good luck.
Everything is okay. Trust yourself, and do not live from a place of fear.
|
|
|
|
|
Joined: Apr 2013
Posts: 278
Third_Degree_AS_Kicker
|
Third_Degree_AS_Kicker
Joined: Apr 2013
Posts: 278 |
I'm negative and proud of it! Seriously the 90% positive ratio is so yesterday  again it is for those who are northern European (mostly Nordic)and male. And now, even those ratios are changing. Remember it used to be a "male" disease with a ratio of about 9-1 now, it's around 3-1 or even 2-1 male to female being diagnosed. You will probably have to deal with people (either doctors or those with AS) who think that you HAVE to be positive or else it isn't "really" AS. there are a few on this site who come across as having this mindset-- ignore them.
Be kind, for everyone you meet is fighting a hard battle. Plato
|
|
|
|
|
Joined: Jul 2013
Posts: 378
Fifth_Degree_AS_Kicker
|
Fifth_Degree_AS_Kicker
Joined: Jul 2013
Posts: 378 |
I am negative as far as the HLA, but did have an elevated CRP. I will say for me the MRI really didn't pick up much. It was a pelvic cat scan that showed the changes. Maybe ask for that?
|
|
|
|
|
Joined: Jan 2008
Posts: 21,346 Likes: 2
Very_Addicted_to_AS_Kickin
|
Very_Addicted_to_AS_Kickin
Joined: Jan 2008
Posts: 21,346 Likes: 2 |
HLAB27 negative.
CRP and sed rate on the high side of normal, but still considered normal by most of the doctors. My current doctors now think elevated is elevated even if its still within "normal".
I wasn't diagnosed based on blood work or on imaging scans.
Rather I was diagnosed based on symptoms:
joint and enthesis inflammation, stomach and ileum inflammation, a little psoriasis, dry eyes, mouth inflammation, leg / foot rashes.
sue
Spondyloarthropathy, HLAB27 negative Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.) LDN/zanaflex/flector patches over SI/ice vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K. chiro walk, bike no dairy (casein sensitivity), limited eggs, limited yeast (bread)
|
|
|
|
|
Joined: Oct 2012
Posts: 190
First_Degree_AS_Kicker
|
First_Degree_AS_Kicker
Joined: Oct 2012
Posts: 190 |
My CRP level was very high and I had erosion of SI joints so the diagnosis was pretty definite. I am HLA negative though, but I don't think it changes the treatment or even the prognosis.
|
|
|
|
|
Joined: Sep 2009
Posts: 1,336 Likes: 4
Bronze_AS_Kicker
|
Bronze_AS_Kicker
Joined: Sep 2009
Posts: 1,336 Likes: 4 |
I do not know if I am Hla-B27 positive. I have never been serum tested for it. I have elevated CRP levels, B12 and D deficiency. Painful hips. Inability to bend over and unable to bend backwards. Constant aching in my hips causes a lot of pain when standing up. Hips ache badly at night. New doctor wants me to come in ASAP. X-rays have been read. Receptionist said they have been calling me all week long and sent letters to me marked URGENT. I never received a single call or letter from them.  Have appointment tomorrow at 2:40 to see the Dr.
- Carpal Tunnel in BOTH hands - Depression (MDD) Major Depressive Disorder - Pituitary Adenoma - Scoliosis - Spinal Arthritis with bone spurs on spine - Multiple Scoliosis diagnosed - Herniating spinal disc - HLAB27+ - Final diagnosis: Mild lumbar spondylosis
Previously told Mechanical Back 'Issues'. Hate this term!
|
|
|
|
|
Joined: Sep 2013
Posts: 14
New_Member
|
New_Member
Joined: Sep 2013
Posts: 14 |
I was HLA-B27 neg + CRP/sed rate normal. X-rays + MRI were normal (though I learned later they didn't give me gadolinium in order to see inflammation!!) Then I guess I would have had a positive MRI because my SI joints hurt like a [*bleep*].
I was then diagnosed only from my symptoms. I began Humira this week, since I have been having a huge flare that won't go away! My rheumy is super nice and so well informed of all the ways AS can hit differently on people. She diagnosed me within a month.
It's been a year since my diagnosis, and BOOM syndesmophytes on my cervical X-ray. She was so right!
Full blown raging AS at the venerable age of 25.
|
|
|
|
|
Joined: Oct 2012
Posts: 190
First_Degree_AS_Kicker
|
First_Degree_AS_Kicker
Joined: Oct 2012
Posts: 190 |
It's been a year since my diagnosis, and BOOM syndesmophytes on my cervical X-ray. She was so right!
Do syndesmophytes always lead to fusion?
|
|
|
|
|
Joined: Oct 2013
Posts: 6
New_Member
|
OP
New_Member
Joined: Oct 2013
Posts: 6 |
Thanks for all the info, I just want to figure out what is wrong with me! Tired of being sick and tired and in pain. It's been about 10 years that this has been coming and going. The older I get the harder it is to push myself. I probably should have been refered to a rhumy years ago. I do see that most people take years to get diagnosed
|
|
|
|
1 members (1 invisible),
455
guests, and
374
robots. |
|
Key:
Admin,
Global Mod,
Mod
|
|
|
|