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#511017 - 05/19/15 03:51 PM A lurker's first post
lula44 Offline
New_Member

Registered: 04/11/15
Posts: 10
Hi everybody… I've been visiting the forums for a while, but this is the first time I've posted. My regular doctor recently sent me to a rheumatologist because of some symptoms I've had, going back about 15 years (I'm now 44). I was nervous about the visit because I know that not everyone has a great experience, but I did really like mine. She spent about an hour with me and gave me an order for SI joint x-rays, which I had done today.

I just now received the results, which were normal except for mild scoliosis. It will be another month before I go back to see the rheumatologist. :-( I hope it's all right if I briefly list my main symptoms. I'd love some responses while I'm waiting to go back to the doctor.

I started having bad lower back pain and sciatica when I was about 30. I never had x-rays, just was given muscle relaxants. Over the years the pain has moved up to my mid back and neck. Sometimes it's debilitating, but sometimes it feels almost okay, so it really seems to be cyclic. I developed psoriasis in 2007, which has mostly been in remission for the last few years. I go through spells of having daily fevers, costochondritis, back pain that wakes me at night, stiffness in my neck and back, nausea and diarrhea, problems with my achilles tendons, mouth sores, swollen left knee, painful elbows and wrists, and a few other minor things that I can't think of right now. My sister and niece have Crohn's disease, so I will be having a colonoscopy soon as well. :-/

I thought the rheumatologist was very thorough on my first visit. I guess my fear is that because of the normal SI x-rays I will be back at square one and not have any answers. I know that no one here can diagnose me, but do the things that I mentioned sound like they go along with either AS or PsA? Or even some sort of Crohn's related arthritis?

Thanks for humoring me and for any responses!

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#511018 - 05/19/15 06:37 PM Re: A lurker's first post [Re: lula44]
Lon Offline
Very_Addicted_to_AS_Kickin

Registered: 09/11/01
Posts: 8342
Loc: Gillette, Wyoming
lula- you sound very much like a mix of many of my symptoms and pains. unclear diagnosis is often the plight of many of us.
It does help to talk about it.
_________________________
1 Kings 20:1-22
ne triumphum canas ante victoriam.




Lon

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#511019 - 05/19/15 06:57 PM Re: A lurker's first post [Re: lula44]
lula44 Offline
New_Member

Registered: 04/11/15
Posts: 10
Thank you for responding, Lon. :-)
I forgot to mention that I have not been tested for the HLA-27 gene, but my doctor did mention it. I'm not sure if she's planning to test me, though. All of my blood tests so far have been normal except for a low positive ANA and severe anemia, which I've been treated for.

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#511031 - 05/20/15 04:42 PM Re: A lurker's first post [Re: lula44]
Lon Offline
Very_Addicted_to_AS_Kickin

Registered: 09/11/01
Posts: 8342
Loc: Gillette, Wyoming
lub- I have heard the remark that my X-rays aren't too bad, etc, yet I find a doctor that will do a five hour surgery. We understand and realize how painful this stuff can be!!!!!

It can be a long lonely battle so keep on posting!

we had a lot of snow yesterday!
_________________________
1 Kings 20:1-22
ne triumphum canas ante victoriam.




Lon

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#511036 - 05/21/15 06:37 AM Re: A lurker's first post [Re: lula44]
lula44 Offline
New_Member

Registered: 04/11/15
Posts: 10
Hey Lon, snow in May? Yikes! We had 90 degrees here in N.C. a couple of days ago.

Thank you for being so welcoming. :-) I'm sure I'll feel better about posting when (and if) I get a firm diagnosis.

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#511044 - 05/21/15 01:40 PM Re: A lurker's first post [Re: lula44]
RBarnes Offline
Member

Registered: 05/22/14
Posts: 26
Loc: Indiana
Hi Lula,

I was diagnosed with AS a couple years ago, despite "relatively" clean x-rays and MRIs. About the only thing I found out was I have an extra lumbar vertebra, which is cool, but I don't understand why I'm not taller :-)

My diagnosis came from four things: Elevated CRP (inflammation) levels discovered by my primary care physician, discussion of my symptoms and subsequent physical examination by my rheumatologist, and - the clincher - the presence of the HLA-B27 gene.

I don't claim to have any medical knowledge beyond that of my own body, but I wouldn't think that clean X-rays would be definitive in the diagnosis of AS or any other auto-immune disorder. I will say that many of your symptoms sounded quite familiar to me and, I'm sure, many others on the forum. Keep your chin up and let us know what you find out!

Take care,
Rob
_________________________
Dx 2013 RF- HLA-B27+
Meloxicam 15mg Norco 7.5/325 Celexa 20mg

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#511071 - 05/22/15 07:03 PM Re: A lurker's first post [Re: RBarnes]
lula44 Offline
New_Member

Registered: 04/11/15
Posts: 10
Hi Rob,

Thanks for responding! :-) That's funny, I have the extra vertebra, too. Well, I know that my CRP was normal at the time of my last blood tests. I got a call from my rheumatologist asking me to come in for a follow-up in a few weeks, so I guess I will see what she thinks then.

I'll try to come back and post any updates.

Have a great night!

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#511089 - 05/25/15 10:19 AM Re: A lurker's first post [Re: lula44]
Dotyisle Offline


Registered: 03/07/02
Posts: 9381
Loc: Rosario, Argentina
Hello there Lula,

Symptoms sound very familiar to many here. Hopefully you can get proper diagnosis... not getting one can be very frustrating.

Have you had the blood test, do you have a family history of AS? Those are 2 more "common" symptoms rheumies use for diagnosis.

Best to you finding answers. Keep coming back here all you want if you need some support when the pain is too much to handle.

Tim
_________________________
AS may win some battles, but I will win the war.

KONK - Keep ON Kicking

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#511122 - 05/26/15 04:58 PM Re: A lurker's first post [Re: lula44]
lula44 Offline
New_Member

Registered: 04/11/15
Posts: 10
Thank you, Tim, I appreciate that. :-)

I do have a family history of Crohn's disease, but I'm not sure about AS. The rheumatologist mentioned that blood test during my appointment, but seemed like she wanted to see x-ray results first. I'm going back on June 17th, so I guess I will see what she says then!

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#511242 - 06/06/15 01:50 AM Re: A lurker's first post [Re: lula44]
amazonwomanrm Offline
New_Member

Registered: 04/27/15
Posts: 13
Loc: California
Hi lula. I too have only recently started posting at this forum. I can tell you that you are not alone re:trying to find out what is going on with your body. AS has several ways of showing itself. But you do sound like you may have something that is along the auto-immune diseases. My doctors have recently told me that they are finding that people with 1 auto-immune can start having problems with other ones. My family has several with RA and Crohn's. I seem to be the only one with AS; although, I was recently diagnosed with psoriatic arthritis too. I can only give my opinion, but I would have the rheumy run all of the blood tests. But know this, never let any test stop you if you believe you have something that the doctors are not finding. I do not have the markers for AS, but you can look at everything I have had and now most doctors will say it is obvious that I have AS. I had to fight for that diagnosis and it was finally found by my regular doctor not a rheumy. The website spondylitis.org has an excellent description of the disease. I recommend you look it up. The most fascinating part to me was the complications section where there is a drawing of a man and next to him it states all of the areas that AS strikes and the percentages of people who have those exact problems. I wish you the best on your journey and I will keep you in my prayers. Amazonwomanrm
_________________________
Female 54 yrs old
HLA-B27 negative
Dx with AS 2011
Dx with Psoriatic Arthritis 2015
Family history of RA and Crohn's
Can't take Enbrel, Humira, or other drugs like that
Have problems with both Sacral Joints, pelvis, neck, back, shoulders, jaw, GI problems, ribs and heels
Had over 8 surgeries most with fusion/titanium
On low starch diet due to high CRP and other inflammatory
markers

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