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#278004 - 05/19/17 05:20 PM Symptoms familiar to anyone else?
tcphd Offline
Registered Visitor

Registered: 05/11/17
Posts: 6
Hello all! I am new to this board and am new to a possible diagnosis of Peripheral AS. To sum up, I am 43 and have had recurring joint issues for several years. I had one doc Dx Rheumatoid Arthritis in February, but the symptoms I have don't seem to match up in my opinion. Went for a second opinion in March, and second rheumy isn't sure on the RA Dx, but is leaning more to Peripheral AS. Doesn't look like I have the gene component, but I have (or have had in the past) the following:

1. Plantar fasciitis in both feet - I NEVER go barefoot, have orthotics and wear special slippers and it seems to under control now.
2. Flare ups - feels like a large, hot bolt screwing into my "core joints"
Core joints for me are wrists, elbows, shoulders, knees, and sometimes hips
3. My hands feel mechanically off and occasionally swell, but it isn't the same burning feeling in my hands as it is everywhere else.
4. Occasional morning "Stiffness" in my hands and sometimes my feet, but mornings are usually better for me and burning in my joints starts up mid morning.
5. I use to have occasional flares, but now it is more often than not.
6. Have had horrible gastro-esophageal reflux for years! LOTS of nexium is finally helping. Can't take advil anymore - but currently on Celebrex twice daily.
7. Ultra sounds of my hands and feet are scheduled to take place in a few weeks.
8. Pain seems better when I keep moving and worse when I am sitting and finally take a moment to relax, although this symptom isn't always consistent and I am still trying to find a pattern.

Appreciate any comments or opinions as I try to navigate through this.
Tcphd


Edited by tcphd (05/19/17 05:43 PM)

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#278005 - 05/20/17 03:16 AM Re: Symptoms familiar to anyone else? [Re: tcphd]
GardenGnome Online
Registered Visitor

Registered: 08/28/16
Posts: 89
Ankylosing Spondylitis can give you swelling and pain almost everywhere especially the joint areas. It can feel hot, burning, swollen, stiff, sharp pain, dull pain, aching pain.

Didnt your doctor do a bloodtest for Rheumatoid factor and AntiCCP? This will help with a Rhuematoid Arthritis diagnosis.

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#278007 - 05/20/17 09:33 AM Re: Symptoms familiar to anyone else? [Re: GardenGnome]
tcphd Offline
Registered Visitor

Registered: 05/11/17
Posts: 6
Thank you, GardenGnome, for your descriptions. Every bit helps me at this point!

The first doc did do blood tests and I am negative for both for RF and CCP. The first doc said seronegative RA. The first doc ordered the genetic test (HB???) for AS and it was also negative, but second doc ordered another one, not sure why (guessing he didn't check the chart or doesn't trust it?). My ESR and CRP are also unremarkable (but I am also on NSAIDS, so I figure they help with that a bit).
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Tcphd

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#278008 - 05/20/17 12:10 PM Re: Symptoms familiar to anyone else? [Re: tcphd]
Winston Online
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Registered: 06/30/16
Posts: 188
Definitely sounds inflammatory, but the symptoms you list, standing alone, wouldn't convince me 100% that it's AS. Do you have spinal symptoms at all? AS causes axial arthritis primarily. Any peripheral arthritis is usually in addition to the axial arthritis. Pain in the buttocks/lower back and extreme morning stiffness in the lower back are the most typical signs of the disease. Many people with AS have to take a hot shower to even get moving in the morning. If you actually feel better in the mornings and your symptoms get worse later in the day, that may point to something else. Of course, there are exceptions to all general rules, and AS is a weird disease.

Have your doctors ordered any imaging? Typically, a rheumatologist would at least order an xray and would probably order an MRI of the SI joints if AS is strongly suspected. Also, have you had any problems with your eyes or your heart? AS frequently causes recurring uveitis (in as many as 30-40% of AS sufferers) and sometimes causes cardiac arrythmias and other problems.

The HLA-B27 test can be wrong. The second rheumy probably was just double checking. That test is not diagnostic anyway. You can be HLA-B27+ and not have AS and be HLA-B27- and have AS, although there is a very strong correlation between AS and the gene, especially in caucasians. The correlation is less strong in Asians and Africans.

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#278009 - 05/20/17 01:21 PM Re: Symptoms familiar to anyone else? [Re: Winston]
tcphd Offline
Registered Visitor

Registered: 05/11/17
Posts: 6
I have had xray's done, but we haven't discussed them yet . . .ultrasounds coming soon.
Definitely a puzzle! Thanks for your thoughts!
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Tcphd

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#278031 - 05/24/17 03:15 AM Re: Symptoms familiar to anyone else? [Re: tcphd]
jeanyus Offline
Registered Visitor

Registered: 08/12/15
Posts: 14
Loc: northeast USA
Sounds much like mine, especially in the early stages. I was first misdiagnosed with fibromyalgia in 2012, then as my symptoms worsenend/intensified,another rheumatologist gave me the USpa diagnosis, Undifferentiated Spondyloarthropathy, related to A.S., because I primarily (at the time) had peripheral arthritis with neck/shoulder manifestations, along with the morning stiffness. 6 months after that, I did get the back and buttock/pelvic pain, so I do have some axial,now,too. I am female and we tend to have the peripheral more than axial, males tend to have axial. In fact, I had a work associate who was first told she had RA, then she got the USpa/A.S. diagnosis, too.
At this point I can't work and my pain and stiffness is constant, not just mornings anymore. I basically can only bend my back to the point of my hands reaching my knees, and things below my knees are difficult to get to anymore. Walking was one of the issues that makes it impossible to work,can only walk for a for short intervals on hard surfaces and basically kept buying new shoes to find ones that were comfortable, which I also wear in the house since it hurts just to walk a few feet in bare feet (I do have Plantar fasciitis, according to a podiatrist. My ankles also became prone to swell, so I have taken courses of Methylprednisolone, and now on daily low dose to prevent it. For other symptoms you describe, in looking for a pattern, that is one of the maddening aspects, because sometimes you can figure out a connection to causes of aggravated symptoms, other times not, it can be random or hard to correlate.

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#278041 - 05/24/17 11:53 AM Re: Symptoms familiar to anyone else? [Re: tcphd]
SouthernMoss Online
Registered Visitor

Registered: 03/12/13
Posts: 1710
Loc: MS
Ankylosing spondylitis (AS) is by definition a spinal disease, affecting your spine and sacroiliac joints. It can also affect peripheral joints in addition to the spine & pelvis. But if you don't have spinal symptoms, you most likely don't have AS.

However, there are other conditions under the spondyloarthritis (SpA) umbrella that primarily affect the peripheral joints, such as psoriatic arthritis (PsA) and undifferentiated spondyloarthritis (USpA).

There is also a newer classification system that some doctors are beginning to use that has two broad categories: axial spondyloarthritis (axSpA) and peripheral spondyloarthritis (pSpA). It could be that your second rheumy is referring to peripheral SpA.

The definitions of the two types of classification are here:
http://www.spondylitis.org/Types-of-Spondylitis
_________________________
Ginny - 56 year old female
Dx with USpA in March 2013; changed to AS in July 2015
Iritis and Scleritis
unicompartmental knee replacement June 2014
MTX, Humira, Cyclobenzaprine, plus Indomethacin ER as needed
Supplements: Folic Acid, Vitamin D, Calcium, Fish Oil, Melatonin, Culturelle probiotic

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#278060 - 05/25/17 09:57 PM Re: Symptoms familiar to anyone else? [Re: tcphd]
tcphd Offline
Registered Visitor

Registered: 05/11/17
Posts: 6
Thank you jeanyus for the comment. I appreciate other people who have had similar paths of misdiagnosis.

SouthernMoss, I do believe my doc was referring to the newer classification system. My plantar fasciitis seems to be what triggered him looking into things further. I definitely have hip joint pain, but nothing with my back (thank goodness!).

Honestly, I just want to understand why I feel like I am burning from the inside out more often than not these days. . . .

Thanks again for the comments, they help me navigate through this!
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Tcphd

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#278066 - 05/26/17 12:11 PM Re: Symptoms familiar to anyone else? [Re: tcphd]
Tacitus Offline
Registered Visitor

Registered: 06/06/03
Posts: 2892
Loc: Reno/San Fernando LU PI

Hello, Tcphd:

So many of the symptoms SCREAM AS! AS instead of RA only in part due to age gap (despite late onset AS; still too young for typical RA)--symptoms more closely align with AS.

I hope the B27 test redo is Fc or ELISA as these are accurate whereas the serological test is terribly flawed and produces probably >30% false negatives.

Inflammation in widely separated places and the loss of esophageal "bias" is very common in AS. Regret the PPI approach is so bad.

Keeping a pain vs food diary might be very instructive.

HEALTH,
John
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Nota Bene: I am not a medical doctor, and my views do not represent the opinions of the SAA
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