Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group No Radiologic Evidence

Mig,

Perhaps somewhere along the way things became a bit distorted. The PT, in my case, never diagnosed a thing. The first doctor (an orthopedic doctor) I consulted with at University of Michigan Spine Center pronounced my "injury" as a lumbar sprain. He's the individual that directed me to PT as a means to help me overcome this "injury".

I agree that no amount of realigning my SI joints was going to do the trick. I had enough of PT and sucked it up for awhile. I then found a new doctor (orthopedic again) at a smaller, less "prestigious" nearby hospital that did the x-rays, blood work, and clinical evaluation.

I guess my point in my post that mentions a "floating" pelvic area is the following. A qualified medical doctor (not a PT) that believes that perpetually unstable SI joints can be dismissed in suspecting/considering AS as the diagnosis, may want to rethink that belief. While it may not be a documented diagnostic criteria, it should not be completely ignored in attempting to diagnose the patient.

I hope this clarifies what I was attempting to communicate a few posts ago. I'm sure it's clear as mud now.

Well, I absolutely care about everyone here, but I think the problem in this case is that some of us with AS are not very pleased when others try to add a new symptom list and assign it to AS...if I went by this new symptom list, I wouldn't meet the criteria for AS and I KNOW I have it, we cannot be irresponsible with the message that we send here, for instance, a newcomer here may believe that they don't have AS because they don't have a floating or unstable pelvis or SI joints because of what's been said here and this may cause a delay in getting the proper treatment...I'm worried about this and it's been going on for over a year now....and another thing, it's a slap in the face to those of us that have confirmed diagnosis', I know what I have, I know how it feels physically and emotionally and I really don't want someone to come here and infer that I don't know what I'm talking about when it comes to my own health, don't cram that down my throat, it won't wash with me....we bend over backwards to try and help those in desperate need to find an answer to their health problems and instead of taking our advice, they challenge our advice & opinions and try to change our minds to fit their needs and create new symptoms for us...I'm offended, it's like someone saying, "I understand how you feel", when in reality, they have no idea....as far as the unstable pelvis/SI joints and tendon/ligament problems, I've been doing some research on systemic tendonitis...and my advice...during your doctor visit, don't waste your time going over symptoms that you DON'T have, limit it to the symptoms that you DO have, no sense in making it more difficult to get a diagnosis...

I totaly agree Michelle well said.
Kevin.

I understand the struggle for a diagnosis which I went through for about a year, so not long enough to feel the level of frustration that so many other have. However, a few key points came up during that year that may be helpful:

1. Many autoimmune diseases have similar symptoms. There is a lot of crossover. A few months ago I made up a chart for myself with three different autoimmune diseases and a list of recognized symptoms and then scored myself with a yes, no or sometimes/somewhat on each, looking for a pattern that might help me guess what was going on. Interestingly, I scored 40% on one, 48% on the second and 54% on the third (or close to this - I don't have the chart in front of me). Many of the "yes"s were common to all three diseases but it didn't mean that I had all three.

2. The best of the three rheumatologists that I worked with looked first for symptoms that matched the various possibilities but then said "Now, what doesn't fit?" That is just as important. For example, I almost had enough symptoms to qualify for lupus, and for a while that was a suspect, but some things didn't fit. When I first looked at lupus symptoms, I thought, wow - I have that and that and that - maybe I have lupus. But those symptoms turned out to also be symptoms of other autoimmune diseases and there were some things that didn't fit. Thank goodness!

3. The disease progress was very very important in the diagnostic process. Looking back I can see that my diagnosis might have been determinable at the beginning but it has been the addition of new symptoms that has made it absolutely clear and without doubt. What I'm experiencing now is quite classic - it wasn't at the beginning.

4. I have severe tendonitis, bursitis and enthesitis as part of my symptoms. I have RA not AS. There is a lot of cross over in the symptoms but some of my symptoms do not fit AS and some crucial symptoms for AS (such as lumbar spine involvement) are not present for me. When AS was suggested as a possible diagnosis, it was because, at that point, it was my axial joints that were involved and no peripheral joints. BUT - I still had no lumbar spine involvement so that diagnosis continued to be in doubt.

5. There are many possible causes of severe tendonitis, bursitis and enthesitis even though they are common in AS also.

6. The pain of these inflammations make life utterly miserable and everyone suffering from them deserves compassion and support. The crucial need for a diagnosis is so that the proper treatment can be prescribed to minimize the risk of permanent damage. However, what might be a comforting thought is that the treatments we are talking about here are the DMARDs and biologics. All of them have some very serious risks and side effects and no one is going to want to take them if they can be avoided. Even with my diagnosis of RA, I'm trying my damndest to avoid them. However, RA will cause severe permanent damage to my joints if I don't deal with it. If, after many years, I was still not showing radiological damage, I would not want to be taking these toxic drugs and would be willing to continue using NSAIDs or other treatments like LDN. In that case, the diagnosis might not be so critical after all.

I don't know if these comments are helpful - I certainly hope they don't inflame tensions any further. KickAS is a wonderful place. I love the sense of humour that everyone brings despite their struggling lives. I believe that everyone here cares for everyone else very much.

Keep on Kicking!

Michelle,
Though I can't begin to imagine what you go through, I have read enough of your posts at kickas to know that this has been far from easy for you and you have overcome enormous challenges with admirable courage and strength.

One of the things I have learned is to never compare pain, emotional or physical. I would never say to someone, "Your stubbed toe is no big deal. Look at this other person with a broken hip." Pain is pain and it is always very real for the person who is experiencing it. A stubbed toe hurts, by golly and that needs to be acknowledged and never minimized.

That is not to say, however, that some people are not dealing with greater challenges than others. Of course they are! I'm just saying that what each individual deals with is that person's reality and their pain is never to be minimized.

In talking about symptoms of AS, it's important to remember, that the family of spondyloarthopathies includes several different diseases, each with unique diagnostic criteria and some with more than one set of possible diagnostic criteria. This situation can create a great deal of confusion even among qualified and competent medical professionals because even the medical profession is not in full agreement about how to diagnose AS and related autoimmune disease. That statement is not meant to denigrate the medical profession. Medicine is of its very nature an inexact and still evolving science and therefore does not have everything sorted out and neatly categorized. Doctors are doing their best to develop reliable diagnostic criteria, but they aren't there yet. Moreover, within the diagnostic criteria for a given disease, there is a range of symptoms which meet those criteria. Because of that, each individual's manifestation of a disease will be unique to that person. Toss is what Wendy said about the overlap between autoimmune diseases and you have a challeging situation indeed, both for doctors and patients.

As far as delays in getting proper treatment, I have seen four rheumies over the past four years and I'm still undiagnosed and still untreated. In fact, I feel as if the medical profession has tossed me out in the cold and left me without guidance or hope. One place I still have left to go to for guidance and hope is kickas. I treasure the help, encouragement, information, advice, support and friendship I have received at kickas. I would like kickas to be a place where I and everyone else is treated gently and respectfully so that all can receive theinformation and support they need.

The best to you,

Karen

Karen I just sent you a PM....I know there are common symptoms in many autoimmune diseases, until radiographic evidence showed in my films, it was anybody's guess with me too, actually I Dxed myself after being told by an ortho that I had spinal fusion and then I told my doctor what tests to run and it all matched up and he sent me to a rheumie and he agreed that I did indeed have AS, I just wanted to clarify that unstable SI joints isn't one of the symptoms of AS, neither early on nor later on....if I were still undiagnosed and had unstable SI joints, having that knowledge would make me look at other diseases and that's really was my point, you can tell some people that the sun is yellow and they'll argue that's it's purple all day long... And if that's tolerated too long, it becomes accepted as a truth and that would be a great disservice to those that come here looking for answers...And I'm so sorry that you're going through all of this, I know it's frustrating for you and if I could make it all go away for you, I'd do it in a New York minute...

hello Karen
I was following your visits to Mayo. That must have felt so good to be able to see doctors and get tests done and results back while you were there. What you did in one week there takes months to do otherwise.

I do not know how long it took for my bone scan to show what was going on in my back. I started having back pain when I was 19 hip pain in my 20's and heel pain in my 30's. The heel pain is what finally made me think there was something going on. when I was in my 20's thinking something is wrong never entered my mind. The only thing that did was that I was tired a lot. I did go to docs for blood work to find out why I was so tired but nothing ever came of it and I did not think to tell them about the back pain and the hip pain at the time. I had my frrst bonescan when I was 36 and it showed what was going on in my back. It did not show anything in my heels but it is my guess it was because it was a new pain. Not enough time to show any damage. I have read that it can take up to 10 years to show anything going on.

I really pray that you find out what is going on with you.

big hugs
Raquel

Hi Wendy,

Yours is an excellent summation and actually a very good example of a path to diagnosis, imo. Symptoms do overlap and evolve over time and although not perfect, the criteria for these do work. The timeline, presentation of onset, which joints and manifestations are involved when and where, are all clues!

That you've been suffering with a serious dose of inflammatory arthritis would seem hard to miss, and narrowing it down to the specific one, as symptoms evolved, took education and experience and time, as one might expect. Hopefully now, you and your docs are in the best position to tailor treatments towards giving you the best possible odds to effectively manage your RA.

I agree with everything you've written.. and hope you are on a path to feeling better soon!
mig

Michelle,

I've never stated that a "floating"/unstable pelvic area was a symptom of AS. I was merely relaying my experience with the progression of my disease. Apparently it is a crime for members to share individual experiences. Additionally, it was to highlight to those without a diagnosis, that this should not go unnoticed or should not be completely ignored by their MDs in pursuit of a diagnosis for WHATEVER THEIR AILMENT OR DISEASE may be. It is not suggest, or was never meant to suggest, that if you have this symptom, you have AS or vice versa (in absence of this symptom you don't have AS).

I trust that those reading forum posts have enough good sense to disclose all of their symptoms and not automatically assume that they do or do not have AS because of an individual's disclosure of their own disease progression.