Hi everyone,

I was hospitalized for vomiting 10 days back. Rheumy (not my regular doctor) visited. I told him that I have been on biologics for AS for almost 10 years and explained about my limited mobility (15 m at a stretch) though fairly flexible. He asked for a review this week. I consulted him, a couple of days back. He went through all my reports – bone scan, MRI, X ray and blood test. He also clinically examined me. He made a bomb (sweet if it is true) that I do not have AS. He mentioned that my hip muscle is weak. Of all the reports, only bone scan revealed inflammation. He mentioned that increased tracer concentration in bone scan need not be only due to AS. When I informed him that I was given anti TB treatment in 2003, he said if it was AS, it would not have resolved without the treatment for AS. He mentioned, even if one is on biologics for AS, MRI should show some marks of AS after biologics, which is not there in my report. He said Biologics reduce any inflammation, need not be due to AS alone. But he has not mentioned what he is suspecting, asked me to continue present medication including biologics for AS, suggested hip strengthening exercises and said mobility will improve. He asked a review after 3 months. He will examine with a new MRI and suggest further. I am puzzled. I consulted several rheumies. He is the first to say that I do not have AS.

Any of you experienced or come across such things.
I am giving a brief of my case for better understanding ::
During 2003, I had difficulty in walking, sitting and even standing. Hence, I was bed ridden for a couple of months.

Following are the test results.

Bone scan : Inflammation at sacro iliac joint, Infection ?
TB Antibody – IgM (Anti TB IgM) : Positive
TB Antibody – IgG (Anti TB IgG) : Positive
Mantoux : Negative
MP (QBC) : Negative
MF (QBC) : Negative

Based on these, it was diagnosed as bone TB. Anti TB treatment was given and I was near normal for three years. The problem re-occurred in 2007 and it was even bad. My total body had become stiff in addition to the problem I had in 2003. After taking bone scan, doctor diagnosed it as Ankylosing Spondylitis ?. MRI stated, No obvious radiological evidence of sacroilitis and SI joints are normal. I have been on biologics for nearly 10 years (Enbrel, Remicade and Humira-presently). But the biological injection is not effective now. Presently, my mobility is very limited (15 m at a stretch) and is fairly flexible.

I had chest tightness & pain (costochondritis ?) several times. So, I thought it was due to AS.

I have tested for the inflammatory markers CRP, ESR, anti CCP and ANA many times during last 14 years. Only on two occasions anti CCP was marginally positive and ESR touched 20 only once. Otherwise, they were within normal values. RA factor was also negative.

All the MRIs (four) indicated that SI joint is normal. In 2008 it was mentioned as there is resolution of the erosion in left SI joint. I am having pain on right side only. I have pain mainly in right thigh, just above knee facing left leg, right hip and diffused pain throughout the right leg. Degenarative changes are progressive during last 10 years.

2014 MRI report mentions that Straightening, Degenarative osteophyte and dehydrated discs are seen in multiple levels of Lumbar, cervical & Dorsal spine. No evidence of avascular necrosis. No significant spinal canal narrowing. Disc bulge at few places. Posterior annular tear with mild neural foraminal narrowing at L5-S1.

I tried NSD for a year and has not got any improvement. I was forced to drop my diet 10 days back and the symptoms are similar to the one while on diet.

I am confused. Your thoughts are welcome.

Thanks in advance.

Jay

Like most people my problems were before diagnoses for A.S. when no one knew what I was suffering from. The fist consultant I saw was a orthopedic surgeon. He immediately said I had a T.B. spine but this was latter disproved. It was some 6 years latter I was told I had A.S. I assume that in some cases there is a similarity between T.B. and A.S.

So what do they think you are suffering from then? You must put pressure on them for an accurate diagnoses. I would usually say that no A.S. was god news but without another diagnoses who knows etc.

Hello, Jay:

I don't know the answers, but curious whether You have been tested for HLA B-27 antigen?

Of course, if it is not AS or RA, the NSD would have no therapeutic value.

But AS is very specific to SIJ erosion, and so many other symptoms indicate AS; this is a true puzzle.

Perhaps You have had giardiasis; this can have every appearance of AS and have very long periods of dormancy.

Hope Your rheumy can sort out Your issues.

HEALTH,
John

The doctor has something in his mind, but has not revealed anything. He mentioned it as muscle weakness. He asked me to continue present medication including biologics for AS, suggested hip strengthening exercises and said mobility will improve. He asked a review after 3 months. He will examine with a new MRI and suggest further.

I have to wait for some more time.

Hi John,

I am HLA B27 negative. This is also a reason for him say not AS.

I have to wait for some more time. I am digging my old reports and checking for abnormalities other than bone issues and for muscle related.

Jay

Jay I can certainly understand your need to know what exactly your mystery illness is. I am diagnosed with MS this I do believe but feel I also have AS because I am HLA B27 positive. My rheumatologist added this finding to my medical file. I know this does not mean I have AS but can't help thinking why the HLA B27 is positive and when will further proof appear.

Hi Magician,

Sorry to note that you have MS and suspecting AS?. It is very difficult if the diagnosis does not reveal clearly. With diseases like auto immune problem, if the diagnosis is not clear, it is really agony.

I have to wait for 3 months for next appointment. It may throw something at that time, but not sure. I have suffered for 14 years and now it is said the problem is different. Who is correct? Keeping the fingers crossed.

Jay

Long time no chat Jay:

I started out seeing an ENT doctor because pain and inflammation was first in my nasal area, sinuses and ears (scalp too) after a scuba accident. Then symptoms creeped down into the base of my scull and so I saw a orthopedic surgeon since I thought to my self "bones." Finally I had symptoms of AS and so the logical person to consult was a rheumatologist.

Perhaps many of us that do not have solid confirmation of AS are really barking up the wrong tree. I originally believed that my symptom progression was from an infection but then I was convinced that the infection triggered AS. I still think it is an infection and that it I can end the progression and actually heal some. I long to be able to sleep again.

Have you tried consulting with either an immunologist, or an environmental illness expert (perhaps you have been exposed to mould/fungus, heavy metals, etc). Also how about an allergist?

I just read an interesting story about a woman that suffered from symptoms for four agonizing years and it was discovered that she was allergic to a protein that is in GMO corn. GMO corn is in everything: in tea bags, juice, and cheese culture; it lined her take-away coffee cups and even plastic bags full of frozen vegetables.

Read more: http://www.dailymail.co.uk/femail/articl...-headaches.html

Keep searching and remember: The definition of insanity is trying the same thing over and over and expecting different results; i.e. I am done with my rheumatologist!!! (I think he's tired of me too!! hhahah)

KG

Hi Jay

It took me a long time to find a doctor to dx me, but when I did, he dx'ed me with what I had concluded several years earlier...undiff spondy....

With that doctors letter, I could get in to a decent rheumy in my area...he said, "lets just call it spondy" since you have all the overlapping symptoms of all the different spondyloarthropathies (enthesitis, cervical and lumbar bone spurs, degenerative changes in the SI joint along with the inflammatory flares, psoriasis (albeit mild), GI inflammation (gastritis, ileum inflammation and small crohns like ulcers) and nondescript autoinflammatory / autoimmune symptoms (malaria rash, dry eyes, mouth sores, erythema nodosum, flares, respond well to some NSAIDs (though can't take them due to gastritis and edema).

Then over time, thought "maybe it really is crohns" as I have antibodies to S cerevisiae (bakers yeast) which is indicative of crohns and had the ileum inflammation and small crohns like ulcers when not flaring so who knows what it looks like down there when I am flaring, and the alternating bouts of chronic constipation and diarrhea that includes not digesting food, along with the mucus when it gets worse, and the Humira clears up the constipation every time I take it, then it develops and the Humira fixes it again. but never "official crohns" biopsies.

Then when I told him that abbvie needed an official diagnosis of one of the ones on their list which doesn't include just "spondyloarthroapthy" but has to be more specified than that, he said, well then its probably AS, but with no evidence of fusing, others won't accept that, though that's probably it.

Then he said, actually psoriatic arthritis made more sense since I did have psoriasis before I started humira..that's one symptom that has been all clear now on Humira.

That is a long way to say...you probably have a spondyloarthropathy....which one? for treatment it really doesn't matter....I've had it concluded undiff spondy, spondy, crohns, AS, psoriatic arthritis, and all start in the gut and biologics work great on all of them (as does steroids)..for me at least.

So, if you can get treatment that works, probably doesn't matter which spondy it is.

But if insurance needs a specific, then maybe it does matter.

I think they overlap so much with so many overlapping symptoms, it can be hard to conclude which one, so I wish one could just be dx'ed with spondy and be done with it.

Of course we're all curious and I'd love to know if its really crohns or AS (women often don't fuse...estrogen has recently been found to be protective..in mice) or psoriatic arthritis (which is what the doctor is going with right now as the most likely to him...which I find kind of funny because my joint inflammation has been unbearable at times and almost had me out on disability, and the GI stuff has been since I was a kind and almost unbearable at times and the psoriasis has been a cakewalk in comparison), but hey, whatever gets me the Humira, as that really does work, and it wouldn't if it weren't autoinflammatory / TNF must be part of the process.

So, can you live with the dx of " a spondyloarthropathy"?

if it weren't autoinflammatory, the biologics wouldn't work, right?

Hi Robin,

What are your symptoms related to AS. Whether MRI and other tests were done?.

I am yet to consult any other doctor. I am just waiting for 3 months time, as told by doctor, to consult him again and decide further for second opinion with other doctor.

The problems with symptoms are they resemble other conditions also.

Jay

Hi Sue,

You are not around here for some time. Nice to see your series of posts.

I did not have many of the symptoms you have indicated.
I am HLA B27 negative.

At the time diagnosis (2007),
I was diagnosed as SpA AS. I got no any significant relief with NSAIDs and steroid. Blood inflammation markers have been normal. MRI (6 MRIs from 2003 to 2014) or X ray has not shown any sacroilitis & SI joints appear normal in MRI. Only bone scan showed SI joint inflammation. Electromyography (EMG) was normal. Nerve conduction test report was normal. Doppler study of the right lower limb and right lower limb arteries was normal.

No swelling of joints. I had chest tightness & pain (costochondritis ?) several times. In 2007, during flare, I had dry eyes, but no redness. Four days before after starting enbrel, it was reported that no evidence of posterior uveitis. When checked after a year (after switching over to Remicade - I was taking biologics without break) it was reported evidence of old inflammation but not active. Now I am not sure on this, since no uveitis was not reported just before the commencement of biologics.

During 2007, my body was very stiff and doctor suspected stiffman syndrome, but blood report was negative. The pain/stiffness was throughout the day. It does not appear that I am having additional morning pain/stiffness.

2007 MRI (just before biologics) States : No evidence of sacroilitis. No evidence of effusion / erosion. Normal study of bilateral hip joints. Straightening of the lumbar spine, Lumbar Degenarative disc disease, Diffuse disc bulge at L3-L4, L4-L5 and L5-S1 levels causing attenuation of ventral thecal sac and inferior aspect of bilateral of neural foraminae predominantly at L4-L5 level. Small cyst within the posterior aspect of the left iliac blade adjacent to the SI joint. No marrow edema.

2008 MRI SI joints MRI (just after enbrel failed and before remicade) :: No demonstrable abnormality seen. There is resolution of the erosion in left SI joint. (Pervious MRI four months earlier, did not shown any erosion)
I always have pain at right side.

2014 MRI : Bi lateral SI joints appear normal. No evidence of avascular necrosis. Straightening of Lumbar and cervical spine is seen. Degenarative osteophyte and dehydrated discs are seen in Lumbar, cervical and right hip. L5-S1 : Diffuse disc bulge with posterior protrusion causing ventral thecal sac indentation and bilateral mild neural foraminal narrowing. Posterior annular tear is seen. Degenerative spondylosis, Degenerative disc disease and No significant cord compression / cord edema.
L5-S1 : Diffuse disc bulge is seen in all MRIs.

I am taking sulfasalazine 2 gm, paracetamol 650, Etoricoxib 60 and curcumin besides humira, but my mobility is limited to about 20 m only. I am fairly flexible and could raise legs 60 deg. Whether one is expected to have so limited mobility with so much of medicine.
Recent rheumy mentioned that biologics reduce all inflammation need not be only due to AS. I tried NSD for a year, but I have not found any relief.

During 2003 ::
Flare, unable to walk, Prolonged Low grade fever
Bone scan : Both SI Joint inflammation – due to Infection ?
MRI : Mild L5-S1 disc herniation
Based on these, it was diagnosed as bone TB. Anti TB treatment was given for 9 months. Condition improved and was normal for three years.

I have elaborated a bit more for better understanding.

Any thoughts?.

Jay

Your A.S. history is like most A.S. sufferers long and complicated. But A.S. is a very erratic and complicated disease. Not only does it differ from patient to patient but can change over time be it day by day or even hour by hour.

Tests such as HLA B27 or even X Rays don't count for much certainly in the early stages of the disease. It is notoriously difficult to diagnose. In my case they took some 6 years to get an accurate diagnoses and it can take much longer with some.

Much of the treatment you have been prescribed is the right treatment for A.S. The problem is do you actually have A.S.? There is no suggestion that I can make that will be of any help to you. Sorry but that is the way of things with A.S.

Hello Jay:

Here is one post from the past
https://www.kickas.org/ubbthreads/ubbthreads.php?ubb=showflat&Number=517066#Post517066

I think that I exaggerated when I wrote "the spine is deteriorating." What was happening when I wrote that was that I was experiencing a lot of crunching in the spine with movement, more clicking and rubbing, a knocking feeling when I ran, chronic sacrum burning/pain and inflammation， and chronic tenderness in the hips. My symptoms had just rapidly changed a few months before that writing. It was as if my shoulders, hips and sacrum were set on permanent fire.

But 2.5 years prior to that I didn't have any "crunching" in the spine or chronic sacrum burning/pain and inflammation, and no damage to the hips. But that (2.5 year ago) was when I had very intense pain and inflammation, diarrhea, eye pain, night sweats,... but no damage had occurred yet. The high intensity symptoms from Feb to May of 2015 were new and likely from infections circulating around my body.

But now (Oct 2017) the AS symptoms have reduced (spine crunching/clicking/knocking has reduced). But burning and pain in sacrum is constant along with new sore and stiff hands in the morning. Hips have improved. The symptoms have evolved -- I have numbness and burning in the left side of my face and lower jaw. I get pressure in the skull cap, temples and base of skull. They are at their worst at night. Shoulders and neck muscles are sore too. There are more. I interpret them as multi-organism infection and liver strain from fighting the infections for years. We collect lots of microbes over the years that gradually act synergisitcally and eventually wear us down (call premature aging).

I feel my symptoms are strongly linked to gut dysbisos. I literally can feel a gut infection and other infections. I really "let the dogs out" when I was using NSAIDs.

Two and a half years ago when the symptoms were first setting in I was waking up with severe eye pain. I thought that it was uvitis but it was more like eye muscle spasm. In the night sweats I had extreme weakness, a damp and rancid feeling all through my body, I had black, greasy diarrhea and psoriasis on the "other side." My stiffness was gone within an hour commuting to work by foot for 25 minutes and subway by 15.

I think that was clearly a multi-organism infection and I still have parts of it. From three and a half years ago up to two and a half years ago I just did some foolish things to break the proverbial "straw": scuba diving with a cold, taking NSAIDs (600 mg/day for many months), and pushing myself at work day (and night) to the point of collapse most nights; I would get home, eat, sleep for a few hours, do some work, perhaps go back to sleep then go to work. I am sure my employer appreciated my sacrifice.

But very mild symptoms began 25 years ago that looked like AS too. Tender heels, rare sacrum stiffness, and on two short occasions a steady pain of a knife going into the spine between the shoulder blades. There were others. My "AS" symptoms started within a year after a flood in which my home developed a permanent black mould problem. In my teens excessive alcohol would trigger "arthritis" in my hands and feet. I never made the connection back then.

My CRP is always near zero when tested. My ESR is reasonably low -- about 3-5. But I drove it up to mid-normal one time (8 if normal is between 0 and 15) when eating starch. I have no known rheumatoid antibodies. The MRIs show inflammation in my whole spine sacrum and head tissues. I am HLA-B27 negative. I have no bone degeneration in the sacrum but I do at the base of the scull from the initial onset of AS symptoms 2.5 years ago in around Feb 2015. I have chronic insomnia which adds insult to injury. I think that its the infections that create the insomnia. The insomnia went away when I was in remission for a few months. I got into remission only a few months after the initial onset of AS symptoms triggered by the NSAID abuse.

Nine months after the initial AS symptom onset that included the night sweats the entire GI track showed inflammation in a CT scan. In the same scan the lymph vessels in the pelvic area were full and there was ascites. Clearly if that GI check was done at the time of the initial onset of AS symptoms my more serious signs would have been seen. I am glad I didn't go because the GI doctor probably would have just thrown more damaging pharmaceutical at me.

Prior to the scuba diving incident I had only minor complaints in comparison to the past few years. What I have learned from the past few years is the following:

1) Starchy foods trigger my symptoms.
2) Never use NSAIDs.
3) Don't drink in excess.
4) Be nice to your microbiota.
5) Exercise regularly.
6) Chase and tackle girls your whole life.
7) Don't stay up late.
8) Learn to say "no" or "[*bleep*] off" politely to bosses & bullies.
9) Get out of moldy homes.
10) Turn off the news and watch Faulty Towers instead.

If I knew those 10 commandments 30 to 35 years ago I would not be on this bulletin board.

To your health!
KG

Just to add.

In commandment 1, "starchy foods trigger my symptoms", what I mean is that I now realize that starchy foods triggered symptoms fifteen or more years ago just like they do today; but they are far worse today because of accumulated damage to the gut and immune system. Back then the symptoms were anxiety, brain fog, a raised fight-or-flight state, fatigue, and a feeling of burning inflammation all over my body. I believe that if I understood that back then that life would have taken a completely different path. At that time my GP labeled me with Fibromyalgia.

And regarding commandment 9, "get out of mouldy homes": I think that it is connected to commandment 1 because a mould colonization can create many symptoms (including the ones I described above w.r.t. early days of eating starch) that are exacerbated by starch. Prior to the flood I had no negative experiences from eating starch. In fact it felt good and made me sleep. Later in life starch just created torturous feelings.

KG

Thank you.

I will just wait and see what my doctor says.

Jay

Hi Robin_H,

Thanks for your detailed post.

Sorry to note the problem you are having. Happy to note that diet works for you. I tried NSD for a year but it has not made any difference.

If infection is the problem, on a long run, if it is not treated, I suppose it will aggravate. But in your case it does not appear so. It is just my thought.

Jay

Hi everyone,

I was doing hip strengthening exercises and underwent massage treatment as suggested by rheumy. I am having a little relief. I consulted him after 3 months. I took all my reports from 2003 and explained in detail about the difficulties faced by me and the treatment taken for AS. He went through all the reports and finally, once again, confirmed that I am not having AS. He further suggested a few more hip strengthening exercises and prescribed MRI – Spine, SI Joint, hip joint and pelvis including muscles. I have taken MRI.



Doctor said except for the age related issues, there is nothing abnormal. He asked me to stop AS medicines including biologics. Suggested me to 1. Continue exercises, 2. Take Vitamin D, 3. Consume eggs and Non vegetarian (for vitamins), 4. Periodically take massage for maintenance and 5. Avoid forward bending.

I consulted another rheumy. She also mentioned, there is no AS as per the reports. She told there may be myofascial issues.

I am still not clear about the diagnosis.

Your comments are welcome.

Whether myofascial issue will resemble AS symptoms w.r.to mobility.

Regards.

Jay

So is this doctors report before or after the MRI scan? An MRI scan is much better than an X ray for your problem. An X ray will not show signs of A.S. till it is well advanced but an MRI showes such signs sooner.

Jay- I have similar reports, with stenosis, etc.

I have been in so much pain I could hardly get into the office. Yet X-rays did not show the pain.
A.S. is debilitating in part because it demoralizes us!

Hang in there brother.
Love Lon

I consulted this doctor before and after the latest MRI scan. On both the occasions he mentioned there is no AS. Kindly have a look at my first post in the thread wherein details are given. This is my seventh MRI.

Thank you.


Jay

Dear Lon,

I took seven MRIs in 14 years. All MRI report says no sacroilitis. Is that the same case with you. Based on this, doctor mentioned no AS. If your MRI report says no sacroilitis, then probably you may have to have a second look.

Thank you

Jay