Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Diagnosis? Not AS ... yet!

Hey guys, first post here on the forum and would love to get some of your opinions on my case.

Here is my medical diary:

- June

back pain in the middle lower region of the back (intersection of the thoracic and lumbar spine) that happens only in the morning and disappears 30-60 min after I get out of the bad. Once I am up, the pain disappears within the hour.

- July

As the pain got worse and started waking me up in the middle of the night and after changing the mattress twice, I decided to see a chiropractor then my PCP. After a series of MRI tests (thoracic and lumbar) the results all come negative. The chiropractor sessions were followed by deep tissue massage sessions - did not help. I take NSAIDS and they help me sleep through the night (the muscle relaxers didn't do much)

- August

I see a spine specialist and a neurologist who both refer me to a rheumatologist.

I see a rheumatologist who believes this is auto immune related and most likely AS and asks for the pelvic MRI as well as HLAB-27. My case fits an auto-immune disease case because I feel better with exercise, the problem happens at rest, I'm 30, the NSAIDs were helping me. I also get blood work and my ESR was high and my CRP is positive.

- September

the Pelvic MRI comes negative and the HLAB-27 comes negative as well! The rheumatologist believes it's a simple muscle spasm.

- October

As I am not seeing any progress, I decide to see another rheumatologist (an expert in AS at Mass General Hospital) and after examining me and going over my case in detail, his diagnosis was: Seronegative Spondyloarthropathy (also sometimes called undifferentiated spondyloarthropathy). He mentioned that I do meet the clinical arm of the AS criteria and that my condition will progress to AS if I don't follow it closely. The treatment is the same as AS starting next week with Celebrex (Nsaids).


The news of course was a little disappointing having been relieved the week before when my MRI and genetical testing came out negative but it is what it is... I have not read any similar cases so thought I would reach out here and see if anyone has heard of my case.

Thanks !

WELCOME, Georg_dignos:

The serological test for AS is unreliable and has produced many FALSE NEGATIVES.

Certainly, Your presentation is highly characteristic of AS and if You would like a few more aspects to help with diagnosis, please visit my dropbox page below--"Important AS Resources."

I have never used the COx-2 inhibitors, but I usually caution against NSAIDs for the damage the older style drugs caused me (accelerating my disease).

Of course, the main thing I would suggest is to check out the diet and try keeping a food vs symptoms record and I will share my own experiences but don't want to taint Your results for now.

It is important to know that AS is a bone-wasting disease and aggressive mineral supplementation is important. The process has been going on for several years, and if You have noticed some decrease in height because of affected spinal column, it is really important to get this monster under control quickly!

HEALTH,
John

Welcome!

I was tested for HLA-B27 (like almost all of us) and it came back negative. At first, I thought that meant I didn't have AS. But that was all before I saw a rheumatologist. When I finally did, she was barely interested in that test. She put very little diagnostic value in it. She took one look at my x-rays and immediately diagnosed me with AS. In those days, the disease had mostly affected my hips and was only mildly attacking the SI joints, but there was enough damage in the right SI joint that along with my symptoms and family history, it seemed to be a fairly easy diagnosis for her.

That was back in 2012 and my journey has had many twists and turns since then. The GI issues started in 2013. Some very unusual biopsies eventually landed me at the Mayo Clinic in Minnesota, but some of the stuff that they were most concerned about (like autoimmune liver disease), turned out not to be the problem.

Today, the GI stuff is mostly under control, but arthritis is not. I had a bad flare last June that lasted for months, when it finally settled down, my SI joints were on fire and now have been for over a year. We have a doctor here that specializes and burning the nerve roots to control pain and that is what I'm going through now (procedure tomorrow).

At the end of the month, I'm having my second hip surgery (this one is on my right, last one was on my left) to address hip impingement issues likely related to AS.

I guess I share all that to say that everyone's journey is unique, as is yours. But whether or not you have AS or undifferentiated spondyloarthropathy, the treatments are essentially the same (the rheumatologist I saw at Mayo, didn't think that there were any practical differences between the two). It is a very serious disease and I just hope you can get the help you need to pursue a successful method of treatment.

I think it is actually relatively common for people to get the undiff spondy diagnosis when first presenting to rheumie as it can take quite some years for damage to show itself. As David has said, in terms of treatment the diagnosis really doesn't matter - you treat undiff spondy as if it was early AS (which it likely is), so well done to that second rheumie for at least recognising the pattern as being likely to be spondy. NSAIDS are very commonly the first line treatment but if you can't tolerate them after trying, then do get back to your rheumie and ask what else is available for you to try. Self help is really important in this disease, and particularly gentle stretching, every day. You should be able to find a set of AS exercises by googling, but really it is just about moving every joint in your body to as full a range of movement as you can without putting too much stress on your tendons/joints. Also keeping up as much low impact regular exercise as you can. Some folk also get a lot of benefit from a low starch or no starch diet (check the diet forum) so it may be worth looking into that and trying it for a while, though not everyone seems to get the amazing results that some folk talk about.

Hey guys - thank you for the quick responses. I just realized that I had replies on my post. It is truly a scary disease and being only 6 months into this journey, it seems that I have a long battle waiting ahead.


Exercises that help significantly: Swimming. I can swear by it - it just makes my day much better.

Exercises that trigger my flare: Boxing. As much as I am going to miss it, every punch on the bag electrifies my body.

I am currently on week 2 in my NSD + ACV and will report back on my progress. I hope the diet takes care of it.

Thanks again

@dragonslayer - would love to see your diet results and trackings when you get a chance. I have been tracking mine religiously.

btw do you track your ESR levels to make sure what you're doing is working for you or do you solely rely on symptoms? How are you tracking the progression?

Thank you for the dropbox files you provided - very helpful!

Hello, Georg_dignos:

When I first started NSD, I was in Philippines where I was able to get ESR on demand. When I strayed from strictest diet, my ESR was 28 (at worst it had been >100) and I experienced increased pain. When I was more strict, and after fasting and/or antibiotics, the measurement was 19 and I had just a little pain.

I first recognized the food connection with AS in 1974, when an accidental fast eliminated my symptoms. After that, I noticed that fried foods nearly always made me flare.

When I added antibiotics with NSD, I stopped being sensitive to any food, but was worried that I could cause a resistive colony unless I remained fairly strict. About six or seven years of the cycles on AP for AS, and I stopped taking antibiotics and eased up on diet, so by now I have a normal diet and my ESR remains between 1 and 9.

Most of what I can share about diet in addition to the above, is that I began supplementing aggressively and had only boron in teeny capsules but they had "potato starch" as filler! They were so small that certainly would not cause a problem...WRONG! No even today I cannot imagine that was not a coincidence, but I repeated that experiment a couple of times and got same results, so I am convinced that that particular starch is too pernicious to mess with in any amount.

Not all of us can track progression of AS through ESR; I am "lucky" only in this way, perhaps, but I already have much damage.

So, I can say with some reliability that Carol's book is an invaluable guide, and Andrea's "Pure and Simple Paleo" recipes are a lifesaver!

The diary I kept was assiduous, but brief period because I began antibiotics so early in my NSD regimen--I included date codes of these drugs and kept out maybe 10 pills from known working batch and I found only one (out of >fifty Tetracycline batch from Pharma) which did not work at all. Things I had the most trouble with were mozzarella cheese, spaghetti squash, "soya isolate" protein shake mix, and mangoes in USA (in Philippines they are safe because harvested properly ripe).

You will easily notice within a day or so which foods are bad for You, and if starting from remission achieved through the diet, You will get back there rapidly--the thing is knowing what to do instead of keeping the flares going.

HEALTH,
John

@dragonslayer - I did a NSD diet without any NSAIDS for 30 days and must admit that on a few days I cheated (and it was really due to lack of knowledge on what contained starch). The results were remarkable although I was no where close to remission. I did not have any flare ups which is great. I was able to sleep without any interruption which is amazing. Some things I noted that were triggering my symptoms were Boxing / MMA (I believe I need to put these exercises on hold for a while), excessive sitting (posture wouldn't matter), and Swimming just does wonders to me.

I got my ESR and CRP tested last week and all my results are normal.

Then I started taking Celebrex with the NSD and I was instantly in remission for 2-3 days before the symptoms got back but again still much better than before. Celebrex w/ or w/o NSD after 3 weeks now seems to be ineffective so I am about to start another NSD diet for 3-4 weeks and try to build my way up to LSD progressively.

By tracking my diet I also did realize that I do drink more than I thought I drink wine about 4-5 days a week so I'm going to try reducing that as well.

I have seen significant progress in the last 3 months. I was on Celebrex and stopped the diet and didn't see any difference. I still wake up a LITTLE sore (definitely manageable) and get back ache after lifting (again very manageable). I have decided to stop Celebrex to see if the symptoms come back. I am not on day 20 and still no difference.

Bloodwork is normal, all tests at this point don't show any signs of the disease. I am really starting to get confused again whether I have undifferentiated spondyloarthropathy or not. I also saw a Rheumo at Tufts (one of the best hospitals here) and he couldn't figure out what is going on and advised me to stop the meds and see what happens.

Anyone struggling with the diagnosis?

One of the hallmarks of autoimmune / autoinflammatory disease is flares (and remission)...not true "remission" as in "no symptoms" but where the disease symptoms can wax and wane...that has always been true of my disease.

It took for me a half dozen rheumatologists, 12 years, and flying down to another city in another state (and spending my own money) to finally get diagnosed...not because things were mild, but that final rheumy said he thought it took so long because:

1. I flared (and though that is so typical of spondy, so many doctors (rheumies) don't seem to get it...if they don't see you as bad as you get, they don't believe you get that bad...I had to find doctors who believed what I told them even if it wasn't happening at the moment...finally that doctor and then my rheumy up here where I live both said, "why would you lie to me, why would you make things up." when I would say, "I know some of this sounds kind of unbelievable"...describing the details of when my neck or SI joint flare badly for instance...or how bad my feet were at one time where I had to ice them just to be able to walk to my car to go home at the end of the day.

2. My symptoms were worse than what is described / what is typically seen for undiff spondy and so it doctors thought it had to be something even more rare, when really it was just extreme symptoms of spondy....several tried to pin me with fibro and EDS, but I had a lot of good doctors who treated patients with both of those, who educated me in how we knew that wasn't it.

I was initially dx'ed with undiff spondy by the doctor in another town, and just "spondy" by my current rheumy...since I clearly have a GI component, he stated something about crohns? but my stepfather has that and my GI component is no where near as bad as his, but my joint issues are a lot worse. My aunt was dx'ed with psoriatic arthritis, but her psoriasis is a lot worse than mine ever was...all those years, I thought it was "just dry flakey skin patches" til I started seeing a dermatologist for something else and he said "yeh, that's psoriasis, why aren't you on humira" but that was about the same time I finally got to my current rheumy and was almost on humira.

All those years (12+) of really bad flares with almost no treatment (ice and PT) really messed up my neck and to a lesser extent SI joint....the bone spurs in my neck are a constant problem...I've been on humira now since June 2013 and it has helped everything greatly, but I do still flare some, just not as severely...and my neck is a lot better now most of the time, though I still can't sleep in a bed (I sleep in my recliner), still can't sit in most cars, can only sit in my very old car that I need to replace for less than 1 hour at a time with ice packs wherever I go even for 5 minutes....my SI joint is now unhappy whenever I try to swim, so there is some permanent damage there too, though its so much better in general on humira (when it flares its fairly mild).

I bring all that up to say, getting diagnosed as early as possible and getting treated with whatever works as early as possible can prevent some of the neck and SI crap I have to deal with now and will always have to deal with (unless they come up with bone spur removal surgeries that work...two surgeons said it couldn't be treated...I do get injections in the neck now and then when it flares to the point where I can't live with it...I may be there currently if it doesn't settle in another month or so...haven't been able to sleep even in my recliner without it getting stirred up each night...though its better than it was a month ago.

I do take Aleve when things get worse than the Humira can handle...but it chews up my stomach if I take it for more than a few days in a row...I tried almost every other class of NSAIDs and cox2 inhibitors and Aleve was the one with the most tolerable side effects that actually works somewhat.

Humira has been truly amazing, but nothing is a miracle "cure". But it has given me my life back (most of the time).

I rarely need steroids now (methylprednisone). In fact, last month was the first time I needed it for a flare since august 2013...prior to that I needed it every 10-12 weeks.

Don't let flares and remission fool you. It can make it a challenge to see what works and doesn't work short term though, but long term you start seeing patterns.

Good luck and if it is spondy, the sooner you get it seriously treated, the less permanent damage you will have.

For me, the combo of joint inflammation (especially the neck, SI, and other entheses like wrists and feet), GI inflammation (especially stomach and ileum), and psoriasis (albeit mild), and other more generic autoinflammatory / autoimmune symptoms like dry eyes, mouth sores, erythema nodosum (when I flared badly) all helped with the dx. The nice thing about skin lesions is they can be photographed and showed to doctors at any time in the future. It was a combo of that final rheumy, the gastroenterologist, and the dermatologist that helped make the dx.