Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Mis-diagnosis?

Hello everyone,

Quick question - my boyfriend was given a diagnosis of 'probable AS' last year, and to him it seemed to fit with his symptoms (predominantly upper back stiffness/soreness, worse in the mornings). This year however, he's changed rheumatologists due to a house move, has seen this one twice and the guy is sure he DOESN'T have AS.

He's come back HLA-B27 negative, shows no signs of anything abnormal on his second MRI (the first also showed nothing, 4 years ago, and he's had back pain for more than 6 years). He's tried various NSAIDs and they've had no effect, neither has exercise/stretching or the NSD diet (admittedly the last two weren't followed for a terribly long time).

But the rheumy has no other diagnosis for him and is referring him to another physio, this time to learn the Alexander Technique.

Just curious what you guys think, if it sounds like it could still be AS or not. I know it's hard to diagnose and people have wildly varying symptoms. I'm disappointed because he won't be able to get on an Anti-TNF trial without a firm diagnosis, so we'll never know if that would have helped...

Thanks

How far away are you from the original Doctor? You might see him again and tell him what's going on. The physio might be ok. Not sure what that is.
But some few people are negative for the gene. Has he had a nucleur bone scan? They can be the best thing to show changes.
~Kewanee

Hmm. Well, I'm negative for the gene, and there's "professional disagreements" as to whether or not I have signs in my MRI's and x-rays. I'm very sure that I have it though, since all the other signs fit.

The fact that he doesn't respond to NSAIDS makes me think he doesn't have AS, however. I think response to them is pretty standard. If I don't take them daily I immediately feel it. If he doesn't respond to them, it may mean that inflammation isn't causing his pain, but something else.

He should be dogged in getting his questions answered. Switch doctors if need be.

Good luck!

Searching,

I am HLA-B27 negative and I have never had anything show up on my MRI'S but I have everything else.

You might not be able to get a diagnoses right away..this is my 15th year with this disease and my Drs. said we might have to wait for several years and see what other symptoms come out before they would make a diagnosis.

Good luck!

Lisa

Hello and welcome to KA!

It's awfully hard to say. The morning stiffness that improves as the day progresses is generally an indicator of some kind of inflammatory arthritis. When you say the NSAIDS had no effect, does that mean they did nothing to alleviate the pain, or does it mean that they only took the edge off the pain? HLA-B27 negative really means nothing, as far too many folk here know. Also, that there is no damage showing on xrays can mean nothing as well, as many people go for years without structural damage. Has he had a nuclear bone scan, which would give a very clear picture of where there might be some kind of abnormal activity?

The NSD/LSD need to be kept to for at least 6 weeks, sometimes longer, before you can say with any certainty that they aren't working.

Back pain lasting 6 years is not normal (as I am sure you two have figured out by now) and I hope you and he push for some kind of conclusive diagnosis. By the way, the Alexander Technique is very good and can be quite beneficial to anyone who learns it. Just make sure he is clear with the PT if anything is causing him pain, or if anything the PT does causes pain that lasts into a couple of days. Not that the Alexander would do that, just a warning in general.

Hugs,

Hi, and Welcome to KickAs. Just wondering, what is your boyfriends job? My husband is in construction building residential housing, and has been for 15+ years. His back hurts everyday, just from his labour intensive job.

Perhaps your boyfriend's job is related to his pain? Also, you said he has upper back pain? From what I have researched, I think, it is usually lower back pain that goes away with activity in the am, usually within 30 mins to an hour or so. But I am NOT an expert and upper back pain/stiffness that lessens with activity may be AS also.

Does your boyfriend have any other areas of pain? hips, knees, neck, etc.? Has he had any other blood tests besides the HLB27? There are other blood tests that can show inflammation [ESR is one, RA {RF rheumatoid factor}] and there are others.

How long did he try the exercising/stretching and the LSD/NSD? When he was NSD was he able to make sure he wasn't eating any hidden starches? [they hide very well the little buggers!] It is important with the NSD that it is truly No Starch that way you can figure out if it will work for you, and it does take time, sometimes a lot of time!

Looking forward to hearing more from you. You have found the best place to research and find answers. I hope you find some soon for your boyfriend. Hey, wouldn't it be nice if you found that he didn't have AS and just had a sore back that can be helped by the Alexander technique? Here's hoping!

Rita

Hi and welcome to KA

If he is not responding to the NSAIDs then in all probability there is something mechanical that is causing the early morning stiffness. One possibility is that he has fibromyalgia.

There will be no harm in going to physio and learning the Alexander Technique because this will help to correct poor posture. I am sure that you are aware that poor postural habits can cause back pain.

If it was AS and he is HLAB27 negative (like myself), then I would expect that he had other symptoms, such as pain and stiffness around the SI joint, possible sciatica and plantar fasciitis.

There are blood tests that can determine whether or not he has an inflammatory process: rheumatoid factor (normally negative for AS), ANA, ESR and CRP. I would expect a positive on some of these tests that would help the doctors determine whether or not he has arthritis, or if the problem is mechanical. The Anti-nuclear Antibody can be slightly positive in the normal population, but if it goes above a certain point then other possibilities such as Lupus are to be considered. The ESR and CRP are measures of inflammation only. You will find that many of us here tend to be negative when the AS is flaring. I was negative for many years on these tests and have gone positive over the last year or so. My ANA on the other hand has been steadily rising, and my rheumatoid factor went positive 2 years ago (and is rising).

He needs to stick to an exercise routine that will help stretch out his back muscles. They will weaken if he is not exercising them. There are some very simple exercises that can be performed that will help the overall condition of the back.

I speak as a person who has spent the past 18 years in quite a bit of back pain. I am not a doctor, and I can only give you the benefit of my experience. My first diagnosis was fibromyalgia. This was a misdiagnosis, for my own doctor thought that it was possible at that time that I had AS. However, in those days they relied upon having the HLAB27 gene as part of the diagnosis, and they tend to exclude women as having AS - thus the pattern of my pain and stiffness was ignored completely.

I find that I get the most benefit from hydrotherapy, and especially from making sure that I swim a few laps when I am in the pool. My upper back improves quite a lot when I stick to this program.

Since I have a genetic problem with my feet, plantar fasciitis has also been a factor in my own situation. I have heel spurs on both feet, and I am recovering from a nasty bout of plantar fasciitis.

Another feature that leads to the dx of AS is enthesitis. This is an inflammation of the ligaments etc. that insert into the joints of the body. I have enthesitis around my knees and elbows etc. Again, this can be improved with an exercises program. If the muscles and ligaments are not getting enough exercise and are not flexible then they break down and weaken.

I hope that the physiotherapist can help and that the Alexander Technique will give relief to the back pain. It is no fun to be awake most of the night because of back pain.

Hi,

Thanks for all the replies

His rheumatologist doesn't seem interested - he's had two appointments and the guy didn't particularly want to see him again as far as I know! The line is - 'it's not AS and I don't know what it could be'. Fobbed off on a physiotherapist (who will hopefully take more of an interest!). I presume he could ask to see another via our GP, but it'll take awhile to get another referral and wait for an appointment on the NHS here in England.

In response to all your questions, he's never had a nuclear bone scan, and I haven't actually heard of that, but good to know that he could ask for that and the other blood tests.

NSAIDs do squat - the only drug that takes the edge off the pain is very high doses of Tramadol. He's got an office job. The pain is nearly always just his upper back, which spreads to his shoulders and neck, and only very occasionally lower back - nowhere else.

I'm not holding out too much hope for the Alexander Technique - not that the technique itself wouldn't help, but his relationship with any form of exercise tends to be short-lived because he's got a short patience with things that he can't see working quickly, and also says it makes him sorer afterwards. Here's hoping he'll give this technique more of a chance and that it might help a bit.

Hello Searching,
I wonder whereabouts in the north east of England you are. I'm from that area and have a very good rheumatologist who never has the attitude of 'doesn't seem interested'. My trust is North Durham and my hospital is the University Hospital Of North Durham. Hope things get sorted with your fella soon.
Best wishes,
Tim.

Hi Tim,

We're currently in Gateshead and his hospital is the Queen Elizabeth. I wonder if he can ask to be seen at a nearby hospital on the NHS? We're actually looking to move house and somewhere near Durham is a possibility. May I ask who your rhematologist is?

Thanks again!
Gillian