Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Need help?

Hello, first post here and need help.
Been having problems for years with low back pain, then hip joint pain, plantar faciitis and now pain in both hands and shoulders. My GP sent off for the HLA-B27 test to settle my mind mainly and to see if their was anything to my pain. After getting the HLA-B27 negative result, I went on to the rheumy appointment that she had set up for me. It was a total disaster, and I have not been back. This guy was crazy, but anyway, he said you dont have AS or anything else, but we might want to look at an xray. Well he did the xray and said that I did not have AS, SI looks fine, but you have multiple discs in your lower back with great amount of degenerative disc disease. How old did you say your were? I said 43, he said this is way more advanced than your age. He said that he had no idea what had caused it and said that I would be in pain the rest of my life, and pay up front when you leave....Well I left and told my GP that I would not go back. Months later, I was having more pain in the SI joints, lower back, buttocks, hands and ankles, and she wants me to go to another rheumy. I went last week, and this guy is totally different from the first one. He give me the best exam I guess I have ever had, went over every joint in my body. Asked history questions all the way back to my teenage years. He brought up several things that pointed him to AS? He described AS to me and said that he would bet money that was what I had. I did not tell him any history of the other rheumy or the negative test, probably should have but I was in shock when he said AS on the first visit? Anyway, he marked my back and tested me while I tried to touch my toes (forgot name of test) and said that I was 4 cm ? and then he tested my chest expansion also 4 cm ? Does anyone know normal ranges for both of these tests? I told him plainly that I was not in a flair up and that I was doing better than I had been in at least a month. He said that he wanted xrays of my hip and my hands and that he wanted to see me again in two weeks. He give me a Kenalog 80mg injection and put me on Indocin SR two times a day. He did the following blood work, GHP, CRP, RF, UricAcid, and HLA-B27 again. He said the meds were only the start of my treatment and if it was not AS it was one of the 3 very close diseases. He would setup my treatment plan at the next visit.

Anyway, are the measurements out of range?

Are the meds the normal first attempt items for AS treatment?

Has anyone heard of multiple prostatitis problems being from AS? He said it was a sure sign, since it begin in my teenage years.

Prostatitis was before my low back pain started in my early 20's.

I still find it hard to believe that he was so sure after my exam, and the history of my case that he told me what he thought it was, without knowing for sure?

Are NSAIDS supposed to do great wonders? Cause the Kenalog shot and Indocin SR is not helping as much as I wanted it too. I can tell a big difference in my hands and ankles, but not my hip pain and low back pain?

I still do not think it is AS, but not sure now? I know something is wrong and it is getting worse. Is there anything else I should do?

Any thoughts to help me with the next visit?

Thanks for the help and I am so sorry it was so long.
Thanks
Pain241

Hello,

I can't answer all of your questions, but I can comment on a couple of them.

Indocin etc are very common first-try treatments for AS, and don't freak out if NSAIDS don't do miracles for you, because we're all different and some of us just don't respond well to them (myself included).

I have lots of issues with my hands and ankles too - AS can occur anywhere there's a joint or an enthesis (where tendons attach to bone) it's not just a spinal thing. Also, I've noticed that certain treatments help one part of my body a lot more than another - (for example, my latest treatment is helping my spine and legs hugely, but my hands aren't responding very well to it).

I'd definitely recommend taking a notebook with you to your next appointment, with a list of questions you and your family have come up with, and also take notes at the appointment. If you have someone who you feel comfortable with who could go with you, that might help too (I know I always forget something I wanted to ask the doc unless I take my list, and a second person always thinks of a little different set of questions for the doctor).

best of luck getting an accurate diagnosis!!
,
-Bridget

It's entirely possible you have AS. The HLA-B27 test, for reasons I've never understood fully, often comes up with a false negative result. And that first rheumy was, quite simply, an a$$.

I'm glad you went back and had a visit with a different rheumy. This one sounds quite knowledgeable. It's good you found him.

The two measurements you talk about are standard mobility tests. I'd be willing to be he looked at the distance of your head from the wall, too. I can't speak to the hands from the floor test, but the chest expansion test shows you to be on the low end of normal. A normal chest expansion range is between 3 and 5cm. Mine is 6cm despite some mid/upper back involvement, but I have singing training and pretty darned powerful lungs.

As Bridget said, what he's done as first steps in treatment is quite usual. If you are still not responding to the Indocid by the time you go back in, let him know and ask for something else. I would strongly suggest that you take all NSAIDS with a full glass of water and food, to better protect your stomach. I'm glad he's redone the B27 test and also to see that he's doing your C-Reactive Protein (CRP). He's probably testing your Sedimentation Rate (ESR) as well. These are indicators in your blood when you have inflammation. These numbers may or may not be elevated in people with AS, so if he says you have no inflammation markers, don't be surprised. Some rheumies don't consider them accurate indicators of disease activity in people with AS because of the number of us in whom they are not elevated, no matter how much pain and inflammation we are in. I would suggest seeing about having a nuclear bone scan. This is one of the best ways of determing where inflammation is located in your body (CRP and ESR can only say there is inflammation, not locate it).

I hadn't heard of the link between AS and prostatitis before, so I googled it. Here's what I found (I've linked these for you)"

Arthritis Treatment & Relief.com - I don't recognize this website, so I'm not sure about the accuracy of their info.

PubMed Central - PubMed is a good resource for research. This is a very interesting article (you'll have to download the PDF or read it page by page).

Hope that helps a little.

Hugs,

Thanks so much for all the information. The article on prostatitis really helped me understand more about what the dr. said. He asked me if it was sterile prostatitis and I told him that I could only remember once or twice them even finding an infection out of 20 to 30 times having it. They assumed I guess since I had it before that it was the same thing? I have alreadys related the low back pain to it, and it always got worse, then they give me antibodics and in a month or so the back pain would be gone. I wonder now, if this was even prostatitis since no infection was generally found? Could this just be a flare that I did not know about back then, and it just went away and the antibodics did not do anything for it? This is confusing to me? He also saw that I was a little low on iron on the last blood test, and asked me if I had anemia. I told him I had it when I was younger but no one had mentioned it lately. He said this was also a sign, that men generally did not get low in iron. It is looking more like it may be a possible answer for all the trouble over the years, but I still have no idea what he will tell me. I guess since the gene test came back negative the first time, I just thought it was RA or something else? I appreciate the information on the meds, cause I was thinking that it should have cleared it all up, and it has not. I know that if what I have been having is flare ups, that they have changed in the last few months, now it seems like the pain has not went away completely as it did before? Just eases off some, but does not go away. Thanks for the help and I will stay in touch and keep searching.
Thanks

Welcome Pain241 - I hope we can help you understand - it is not an easy thing.

I wish I had a nickle for every time I have heard "He said that he had no idea what had caused it and said that I would be in pain the rest of my life, and pay up front when you leave...." over the last 38 years!

The folks here have more experience and compassion than all the MDs in the world!

Brian

Brian, I do understand what you mean. I am already seeing that the folks on here are well informed on many areas, and they all seem have compassion as you mentioned. I am learning so much by reading on here, wish I would have come here a long time ago.
Thanks
Ron

Whew I remember those days of going to the doctors getting all the different diagnoses, part saying I didn't have AS even though I am HLA-B27 positive. A few doctors told me my pain was in my head. It was good I had a nuerosurgeon and rheumy who actually took time to check me out from head to toe and do the test. I am so glad most of the doctors nowadays listen more to the symptoms and actually know what AS is. Now if the rest of them would jump on the band wagon instead of pushing patients through so they can get to the next parients a lot more people could find relief no matter what the illness is.

You don't need to leave just because one doctor says you don't have AS. AS can affect any part of your body including your organs, lungs, heart and eyes. It can cause colitis, IBS, Chrons, etc... But there are still those few doctors who feel if it does not show up in the first x-ray there is nothing wrong. It is a miracle some of us have not gone crazy from those kind of doctors.

I hope things will start looking up for you soon and allow you to get some well deserved relief.

Brent

Thanks alot Brent, after seeing the first doctor for the first time, I knew I would not be back to him. The only worry I have is that I had to reschedule my appointment with the second doctor because we are going to Florida for vacation. I am afraid that the way the pain has been it will not be much of a vacation. The wife wanted to cancel it, but she enjoys it so much I did not have to heart to cancel. I look forward to it every year, as we swim with the manatees and have a good time. Do not know if I will be doing any swimming this year. The 10 hour drive down there will probably be terrible, as I can not seem to sit long at all. I see one of the criteria for AS is that NSAIDS should help, well the Indocin sure is not helping me much or the kenalog shot for that matter. Its been a week today, so I think it should have had time to work. Maybe I am just expecting to much. Thanks for the help
Ron

Hey Ron,

I hope you enjoy the vacation, I took a trip to Fl a few months ago and the drive time was closed to the same. Be sure and stop to walk around and stretch along the way. The first day there I stayed pretty much in the room resting and stretching trying to work the kinks out. About the middle of the second day I was able to get out for a while. Going for a good swim might help you after the long trip. Just be careful not to over extend your legs and back as being in the water let us move better and we don't realize we over did it until we get out.

I never had any luck with nsaids except for them giving me ulcers and acid reflux. There are others who they help quite a bit here. I guess if one type of medication helped everyone there would not be a need for so many other types to be made. Maybe your new rheumy will be able to help you find something that will work for you. He sounds like he is more up to date than the last one.

I hope you and the wife have a good and safe trip the two of you can look back on as good memories.

Brent

Hiya Pain241,

B27 negative average age of diagnosis is around 38.

imflammation anything ending in itis, goes with the territory....I just call it Dave'itis now, urinary tract stuff itis is on the list of co conditions symptons...

I think your chest expansion and what sounds like a lumbar spine stiffness test are on the low side.

Hydro therapy works well it can help alot.

Indo' the nsaid is a powerful nsaid about the max strength, it can be harsh on the gastro and other organs so watch out for side effects. There are others in this class and sometimes you need to find the best one for you.

Degenerative seem to go with this condition.

Dave