Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group New here Question about Rhumatologist and symptoms

Hi, I am new just found this site. I have had symptoms for years but have not been fully diagnosed yet. My GP thinks I may have some form of spondylitis. I have a appointment to see a rheumatologist in a little over a month. I have been having symptoms( recorded by my doctor ) since 2006 but has been actually much longer. I have the lower back pain / stiffness / burning into the upper butt area, and down sides of upper thigh, burning eyes/slight blurriness at times, mostly in morning goes away as day goes on. I saw a opthomologist he did not say it was uvietus but blethperitus? I have floaters in left eye, pain in feet and diagnosed with planter fashitus. It is worst in left foot, burning stiff knees. More recently pain in upper back to left shoulder, and pain in left shoulder, neck stiff, chest pain ( had stress test passed with no problems except winded a little sooner than I should have been ) The newest is outside of big toe on left foot goes numb at times. Exhaustion and wide spread stiffness has been going on as long as I can remember. I have been tested for RA factor, lyme disease, HLA-B27 all negative. The symptoms go in waves, they never totally go away. Some times I will feel somewhat better for a few weeks then bad for a month, some days are better than others. It's always worst in the morning and gets better as the day goes on. I am forcing to get myself through a day of work. Is there any advice that any one has on where to go from here, and any questions I should be asking the rheumatologist? or things to make shure the doctor does? I am 38 years old now but have been dealing with some of these symptoms most of my adult life. I am a Mechanic by trade and blamed it on my occupation for years, but now I am realizing that isn't the case. Thanks

Is it really uncommon to be HLA-B27 negative and have A.S.?

It's more uncommon than you are led to believe, specially among women or those who are [b]not of northern European ancestry.
[/b]Many times you have to fight with the doctors who fall into the trap of HLA-B27. There are also some who think that it is a faulty test that shows you as negative and urge a more costly one. (even among commenters on this sight)
It is not a diagnostic tool

When you see your rheumy, I would bring a list of ALL your symptoms. No matter how odd-like my toe nails are horrible and no doctors cared about it- turns out they are a commonly called psoriatic nails. This helped with my diagnosis.

Give a copy to the doctor before you go in and also keep a copy of the list with you.. While you are talking with the rheumy, keep referring to the list.

If you have copies of test paperwork, bone density or x-rays and such,bring them and leave copies with the doctor.

I give the same list of symptoms to all the doctors I deal with so every one is one the same page.

by letting her look at the paperwork before seeing me. then answering her questions and doing the little tests and measurements -- I had a diagnosis with 30 minutes. It was a game changer for me.

Also, whenever you leave any doctors office make sure you have a statement of your visit. What the doctor thinks or has found.

Thanks, I have never got a statement from the doctor before? he some times sends me a letter with test results in the mail a few weeks later. After all this time this is the first time he has suggested a possible inflamitory disease. I have just been treated for each symptom individually ( with not much success). I have always thought that it seems like my body is fighting itself. I use to explain it like you are driving a car with your foot on the brake and the gas at the same time. I am a male of northern European Irish and English decent, if that makes a difference?

You have to ask for one usually. Often, in small print, there will be a sign or notice informing patients that they are available upon request.

You have to take the bull by the horns and not be passive in your medical care. The doctor works FOR you. Somehow, the position of perceived power has gotten switched in the relationship.

Remember- it's your body, it's you who are paying. It's no different than hiring a mechanic to work on your car. The mechanic has specialized knowledge but you have final say. You would question the suggested work and even get a second opinion on your vehicle and keep a record of what the mechanic has done in the past on your vehicle-why would you do any different for your body.

So much of what you describe sounds so familiar.

And that analogy of your body fighting itself, that's often how I feel.

I've been dx'ed with undifferentiated spondyloarthropathy because I have the joint inflammation (enthesitis), the GI inflammation (gastritis and inflammation in the ileum but not IBD), a little psoriasis, and then "generic" autoimmune / autoinflammatory stuff like the dry eyes / blepharitis, mouth sores, fatigue when flaring, flaring, etc.

You got some good suggestions already from others.

I now have a "medical resume" with all my information in bulleted points: symptoms, meds, doctors, treatments, diagnoses, scans, blood work.

That has been a helpful tool to give the doctors.

I also write down the things I want to tell the doctor / ask the doctor, and I write down what the doctor tells me.

I'm now on Humira (and prednisone when I flare), but it took 12 years and almost being on disability just to get a diagnosis. But then I've been getting good treatment since. Aleve will work for me in a pinch, but side effects kick in within a few days.

I too used to think it was my job (too much sitting), but then realized, none of my other colleagues have all these problems.

I'm also HLA-B27 negative; as was stated above, doesn't mean a thing.

You'll see all I'm now doing / now on; but it took a long time to get to that point; hope its less time for you.

I believe all the old literature on AS states that about 90% have the HLA B27 gene... so 10% do not have.

That is still a fairly large percentage.

Thanks all, I am going to start working on a list of symptoms before seeing the rhumy. I have also been on a gluten free diet for about 9 months. something I am trying on my own, it has made a noticeable difference in pain/stiffness in legs hips specially climbing stairs. 9 months ago just the short drive home from work ( about 20 minutes) I would stiffen up so bad I could barley get up the 3 steps into the house. After reading some of the comments on diet and starch, I wonder if it's just that I'm not eating as much starch and not the gluten? Does any one else's shins swell when standing all day? goes away in a couple hours of sitting in the recliner at nite.