Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group New here

So apparently mine has taken a turn for the worst. It has been going this way for about 2 months and was super aggressive spa over 5 years so maybe super aggressive spa can lead to as? I probably should have told my doctors how aggressive it was.

I haven't missed 1 day of working out in the mean time. I'd say that's like 6-8 months without going more than 24 hrs with out at least 30 mins on my elliptical/sauna. The only time I count tennis as a workout is when the inflammation was down and I would get a workout in the areas with disease--sweat/movement, that type of thing. This happened a lot about 3 years ago and once about a month or 2 ago. I guess it was an antiinflammatory response cause it was before getting an immunological response which was not reaching my upper spine but was really weak everywhere else. Ie no one else would have been able to have elucidated that response. I think that means when the humira dropped off 7 years ago I gained some type of resistance to that 1 or that class. Remicade was only lasting a few days.

But I have saw certain papers saying that you have to treat AS different from SpA and that besides optimizing the tnf blocker there are only 3 other options and I don't think 2 are as good as the third that won't come out till later this year.

Too much info than I even know what to do with. I just know this is really depressing. I have had 2 fantastic doctors who I feel have looked out for my best interest but sometimes I feel alone in this. Wish I would have made my symptoms and experience with humira more clear. I think I was scared they would take it the wrong way.

I don't know what to do. I am not the best about reaching out but I think they should know that it was finally able to do what it has tried to do over the last 5-8 yrs.

I was very wary of MRI because I was afraid like samum said they could take it as non-as esp. Without dye and stir?

I have blood work order but my crp and esr use to be real high 7 years ago like 3 or 4 pretty highly flagged results but I had considerably less inflammation then. And my sa was very active at the time of MRI being negative to the radiologist. He did note my active ibd though. Although 1 was of pelvis and 1 was of the neck and although the neck is second the upper back is far worse.

Also it's definitely overt crohns now since the AS. Can feel lesions in the small bowel now. This happened practically instaneously.

Maybe I should write down symptoms and hx? But I'm afraid I could present it wrong. Maybe they have email. I know I communicate with my eye doctor this way.

Any suggestions what I should do? Maybe I should call them both? I know these complications have probably been seen thousands of times by the 1 doctor but I really like my other doctor. Maybe he thinks we need to bring in the expert too. As great as he is mine is not your garden variety spa.

I definitely don't want any new doctors. I feel lucky to have the ones I have now. Any idea what I should do?

Well apparently 30 year old horses can still serve really well. Must be abbreviated. I need to get to the doctor ASAP so they can save my career!! I can still go pro!! As unhappy as I am!! I'm sure ill get use to it!! Halp!!

Julyguy, where in Canada are you? We have a ton of Canucks here, from Vancouver right through the Rockies, the Prairies, Ontario and Quebec and on into the Maritimes. Someone might be able to help you find a competent specialist to be referred to.

Is this doctor a psychiatrist? If not, she shoudn't be treating you for psychologocal issues without the diagnosis of a competent specialist in that area.

AS is a seronegative arthritis, so if you have AS, rheumatoid factor will be negative. Also, not all AS patients are positive for the HLA-B27 tissue-type, so that's not going to be definitive either. CRP will say if there's inflammation but not where, and x-rays are often deceptive in AS patients. I had AS for 20 years before my x-rays showed anything.

Another resource in Canada is The Arthritis Society. Please go there as well for more information.

You may have to travel to see a qualified and competent specialist, but you should be referred to one. Regardless of whether or not you have AS, you need a proper diagnois and not some doctor who decides the way this one appears to have.

You might have to be your own advocate.

Warm hugs,

Inanna,
I'm in Southern Alberta, a couple hours from Calgary. I looked to see if there are any rheumatologists in Lethbridge, where I live, and there isn't from what I can see. So I will have to travel to Calgary, which I am willing to do to see a doctor that will get this properly figured out and treated.

My doctor is not a psychiatrist. I did have a phych eval, and she told me I am not crazy. She said that I could book another appointment with her to talk but I don't think she was convinced that its conversion disorder. I read that 25% of people diagnosed with conversion disorder don't actually have it, they just have incompetent doctors that use that as a go to diagnosis.

Based on everything I have read about conversion disorder, my symptoms are nothing like it. Conversion disorder also doesn't cause inflammation from what I have read, and I get inflammation in my hands, feet and can feel the heat from it in my low back and neck.

Good to know about the rheumatoid factor, I did not know that it would be negative for AS.

I haven't been able to afford to get my eyes checked after having a lot of pain and light sensitivity, but I plan to ASAP. I should be getting money owed to me from work on friday and will call to book an appointment. Last night I was working on my computer and the screen was bright and it started hurting my left eye. Had sharp pains for a bit and my eyes just ached. So maybe getting my eyes looked at will help get some answers too, since they are affected.

I just know I need a real diagnosis, so I can get proper treatment and need to know if I can go back to my job as a health care aid or if I need to find something different. So sick of being off work.

Hi Julyguy, I can speak from experience that Calgary has some excellent rheumatologists at U of C hospital. I was well taken care of there.

You are NOT crazy and you deserve adequate treatment. Unfortunately a lot of us went through the ringer to get a diagnosis and treatment, but there was a light at the end of the tunnel. I hope things will be looking up soon for you too. Take care

Hey Julyguy, how long have you had the light sensitivity? AS can affect the eyes and pain in bright light is one of the signs. Please go to emergency and tell them that you have not been diagnosed with Ankylosing Spondylitis, but that this is on the list of things being looked at in your case, so that they get you in to the eye clinic for a proper looksee. Eye doctors cannot help with this, ophthalmologists are the competent specialists in this area.

You may (may) have Iritis, which is an inflammation of the cornea that puts pressure on the iris. It is extremely painful and can be very bad. It might just be dry eyes, or conjunctivitis, but if it's Iritis you need to be treated sooner rather than later.

If it is Iritis, please let your doctor know and add it to your list of symptoms. It never happens without a cause and the cause is often inflammatory arthritis.

Please, emergency for referral to the eye specialist. Eye doctors are not equipped to diagnose this.

On a brighter note, I see that Megan has responded. She's one hell of a kicker.

Warm Hugs,

Thanks Megan, that's good to know! I will try to get my doctor or a doctor to refer me there.

It's such a frustrating process to get answers as to what is causing all the pain and issues.

The light sensitivity, eye pain and blurred vision all started in December, a couple months after the back pain and joint pain started. All I could do was lay in bed with my eyes closed and my hands over my eyes to stop any light from getting in. My dr at the time (this one moved away several months ago) knew about it but didn't even get my eyes checked or anything. I told her I was concerned about AS, at the time I didn't even know the eye issues could be related, I thought it was due to all the neck pain causing headaches and affecting my eyes. Instead of looking at AS she decided I had a rare neuromuscular disease called Myasthenia Gravis and started treatement for that that reduced my pain because it changed how my muscles worked so it acted like a crazy strong muscle relaxant, but over time stopped my muscles from working normally all together.

So that med caused the eye pain to go away for the most part, only came back when I got a lung infection. Now that I am off that med the eye issues are starting up a bit again. It hurts a bit to move my eyes around, but not too bad. I do notice some light sensitivity just not as bad as before. I do use refresh tears for dry eyes and they do nothing to help with this pain. The cool drops feel good on my eyes when they hurt a lot but thats just for a second.

I see my doctor again on the 31st, so unless my eyes get bad enough for me to have to go to emergency, I will make sure to tell her. I had written out all my symptoms everyday when this all started and gave them to my previous dr, but I don't know if she put them in my file so I am going to print them off and take them too. All my symptoms listed indicate AS.

Thanks for the info about the eye exam. I thought my eye doctor would be able to see something to help with the eye issues. I'll save my money and try to get a referral an ophthalmologist.

The fact that she ordered these test shows she is looking into it. She is checking for Lupus aka ANA test or, RA aka Rh factor test, or AS HLA-B27 test. The C-RP test is for checking inflammation in general. She should have run the ESR test also which test for inflammation too.

Thing you should know is that HLA-B27 positive does not mean you have AS but that 95% of people with AS test positive. This means you will have to have other symptoms to coexist to receive such a Dx.

Also, there is a dirty little secret in radiology that exists. Most radiologist are not adequately trained to read x-rays for arthritic changes. And, it could be years of pain before any damage will actually show up to begin with. I am assuming that she requested x-rays of the SI joints, correct? My personal experience is the local radiologist said zero fusing. The highly trained rheumy and the study I joined both basically said SI joints were totally fused, grade 4.

If you do show inflammation and since the x-ray showed nothing, can you request an MRI with contrast dye that specifically shows inflammation?

Take charge of your own care if you are not satisfied and research for a competent rheumy if your tests return positive.

I am glad that the HLA B27, Rh, and C-RP tests were ordered. I don't recall seeing the ESR test on the req. I had asked for these tests to be done back in November/December by my original doctor but she didn't do them. The ANA test was already done when this all started and it was negative.

I don't remember seeing S/I joints specifically mentioned on the req for x-rays. I know they asked for lumbar, thoracic and cervical. I should have taken a photocopy of the req so I could remember for sure what was done.

If the results show anything, I will be asking to be referred to rheumatologists at the University of Calgary, that was recommended in a previous post. If they don't show anything, then I know my doctor will try to send me back to work, and I don't know what I will do because I have to be able to transfer and assist older adults when I can barely stand myself. I would be putting them, as well as my co-workers and myself, at risk if I went back to my job and I can't do that.

I think I only have one week left of physio so that is good since he is not helping me at all. I was doing my arm exercises this morning and my low back went into spasm. I told him and he didn't even care or try to do anything to get it to settle. But he also thinks its conversion disorder, not sure why cause hes a physiotherapist and not a psychologist/psychiatrist, so he just keeps giving me all sorts of exercises to do that hurt me to do. The area where it spammed is still bothering me and this happened a couple hours ago.