Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Rheumy appointment frustration

Hi Heather, Thank you for your kind and encouraging words. I have really felt like I needed them. This site is wonderful for that. I am going to phone and book an appointment today with my GP and talk to her about what the rheumy said and see what she thinks. I need to renew my prescription anyways.

As far as the physio goes, when I phone the office yesterday they said that they would put me with the kinesiologist, works with muscle strengthening and joints, to work on core strengthening exercises. I guess the idea being if I strengthen those muscles then my back pain will magically go away...right!

Anyways, I will be very careful with what the physio is doing because the last thing I want is to cause myself more pain. I think I live with enough on a daily bases.
Thank you again,
Jill

Hi Megan, Thankyou for your thoughtful words, I really have needed them. I hate how they can so quickly make you feel like an idiot. It is very maddening. I hope that I can find someone who will listen to me and not make me feel like it is all in my head. Yesterday the rheumy said that I shouldn't have done so much research before knowing what we were dealing with because now I have filled my head with too much information that doesn't apply to me. Whatever. I have read enough to know that alot of the symtoms, minus the iritis, (stiffness upon standing or sitting too long, waking up way early in the morning because it is just too much pain too stay in bed, pain in the SI area that can be so bad somedays, that I can hardly do anything, and major stomache problems) apply to me. I am thinking that I might push for the MRI anyways, even though I am completely clausterphobic. It would be worth it just to know for sure.

Anyways, I am sorry about your mom. I hope that it doesn't get to that point for me.
Thanks again.
JIll

Jill,
I am 56, been in pain since I was 12, negative on B27. My symptoms are systemic = head to toe. With all joints being lightly fuses, 2 fused disks in my back, and a neck that is just killing me. When i WAS YOUNGER I managed more through exercise, to get the endorphins going. Getting used ot pain sitnks. At times I could not hold my own children, now my grandchildren. Yet there are days when I can work hard for a few hours. The more pills you take, the more you will have to take later. Be very careful. My liver and kidneys are not good because of NSAIDs.

Have you gone to the no starch diet section?
We are all here to help.
Br'er Lon
God has sen fit to let me keep working, but half the time I wonder if today is the day I can not get dressed. Mirpex and requip helped me greatly, but it caused nightmares and loss of sleep.

Hi
You are not alone in your story. So many times I have heard the same thing with trying to get diagnosed. It took me 5 years! Even though there is family history, in that time I had inappropriate physio - traction, manipulation which caused bruising up my spine, arthroscopy on my knee; they said I had damaged cartilage, I didnt. Referred for counselling; apparently the pain was in my head!
My blood tests never show inflammation and xrays are ok.
Eventually a physio asked why I hadnt had b27 test because of the family history, its not like I hadnt asked!


So, my point is it seems to happen to alot of people on their road to diagnosis, persevere and I hope you meet the wizard of oz at the end who can solve it for you.

Best Wishes
Sam

Hi Ladybones, Thank you for your response. The support here from everyone has been fantastic and has helped to confirm that 1, I am not alone and 2, I should follow through on what I know, which is something is not right in this body of mine. I think that I will talk to my family dr. and ask if she thinks I should get a second opinion and the MRI done. I am not going to just sit around and wait to have more pain and problems.
Thanks again,
Jill

Thank you Tim, I am doing just that right now. I am not going to just sit around and wait for things to get more painful and more troublesome. Alot of the symptoms and things I have read about on here sound so much like me that it isn't funny. I will be going to my GP and asking her about another Rheumy because I am not happy with how she treated me. I felt totally dismissed and that isn't right. Unfortunately I live in a smaller town and there are only 2 rheumy's here so may need to travel to find one that will work with me and listen to me.
Thanks again.
Jill

Hi Sharon,
Thanks for the encouragement. I have really needed it. I am really glad to hear that you have been doing so much better after your surgery. It must have been a scary ordeal. I will be doing some more research and talking to my GP, whom I trust completely, to see if there are any other options ie: new rheumy, MRI, different meds etc., and hopefully she'll be a little more helpful.


Thanks again,
Jill

It seems like taking one drug to fix one thing causes other symtoms to need more drugs. I just don't want to control my life with medication. I guess if that is what you have to do for relief then that is what you have to do. I also have 2 kids. My youngest is turning 2 tomorrow, and there are days when it takes everything in me to just do the necessities of looking after a young family. I have to say that I am lucky as I have a lot of people to pray for me. My whole church choir prays nightly for me to have some relief and I feel that the lord is here and he is doing everything that he can to make these days more bereable.
Take Care with your surgery, and thank you so much.
Jill

THank you sam for your post. I am lucky that I haven't had to go through unnecessary surgeries and I am sorry that you had to before you could get someone to finally listen to you and your symtoms. I did have the b27 test and it came out positive, but I don't know about family history because I was adopted. It is pretty frustrating because I think if I knew that maybe the Rheumy would take me a little more seriously. Oh well, I will persevere like you said and will find my way to a diagosis.
Thanks again.
Jill

here is a repost with links on diagnosis of axial spondyloarthritis:

http://ard.bmjjournals.com/cgi/content/full/63/5/535]
EXTENDED REPORT
Rudwaleit M, van der Heijde D, Khan MA, Braun J, Sieper J.
How to diagnose axial spondyloarthritis early.
Ann Rheum Dis. 2004 May;63(5):535-43.
PMID: 15082484

"...Results: The presence of inflammatory back pain features** increased the probability of axial SpA from the background 5% prevalence to 14%. The presence of 2–3 SpA features was necessary to increase the probability of axial SpA to 90%..."


FLOWCHART FROM EXTENDED REPORT:
http://ard.bmjjournals.com/content/vol63/issue5/images/large/ar11247.f1.jpeg

http://ard.bmjjournals.com/cgi/content/full/63/5/471
LEADER ARTICLE:
Barkham N, Marzo-Ortega H, McGonagle D, Emery P.
How to diagnose axial spondyloarthropathy early.
Ann Rheum Dis. 2004 May;63(5):471-2.
PMID: 15082473


This set of articles is challenging.
Here is my understanding of the basic concepts:
Xray changes, which are necessary for the diagnosis of AS by established criteria (Rome criteria or New York criteria, more info here: link to old post on criteria) are recognized to quite slow to develop. Combinations of features found in association with spondyloarthropathies can be used to indicate a likelihood of diagnosis of "axial spondyloarthritis" or "axial spondyloarthropathy" - which MAY represent an early form of AS before xray changes can be found. Absence of any particular feature (such as HLA b27 positive status, or IBD, or psoriasis) does NOT eliminate the diagnosis of axial spondyloarthropathy, rather it makes a diagnosis less likely. Conversely presence of any particular feature (such as HLA b27 positive status, or IBD, or psoriasis) does not establish the diagnosis, rather it makes the diagnosis more likely. Combinations of features make the diagnosis of axial spondyloarthropathy even more likely. The authors suggest that finding combinations of features which bring the likelyhood of diagnosis to 90% or greater-may be taken as indicating a positive diagnosis of axial spondyloarthropathy.

**This set of articles relies on understanding what is "inflammatory back pain"
"Inflammatory back pain" (abbreviated "IBP") is back pain which has the following characteristics:
1. Early age of onset < 40 years (frequently in the 20's).
2. Insidious onset.
3. Duration usually > 3 months prior to consulting a physician.
4. Associated with A.M. stiffness.
5. Pain improves with exercise, worsened by rest. "

if that is the pattern of pain you have and noting you are b27 positive and noting that you have had surgery for heel pain as a teenager - looking at table 2:
http://ard.bmjjournals.com/cgi/content/full/63/5/535/T2
according to this table "IBP positive** plus Heel pain plus HLA-B27 positive [indicates] post test probability [of having axial spondyloarthropathy of] 83 per cent"