Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Help finding diagnosis and

Hello

I'm trying to unlock the reasons for my pain and am having a rough time getting answers.
Many of the stories on this forum have guided my path on getting answers.
But thus far, no diagnosis or treatments (including two surgeries) have worked at all..
(edit: except Predisone did help a bit)

(38 y.o. male)

My symptoms..
• Inflamed, tight, painful back. The back pain is constant. It’s been there everyday for over ten years.
• Constant foot cramps, calf cramps. These cramps NEVER go away. They’ve been there for over ten years.
• Popping, grinding and inflamed shoulder joints. Limited range of motion in shoulder joints, also VERY painful to move.
• Shooting pain down arm and into the fingers.
• Stomach bloating/indigestion
• Severe Fatigue

I am:
• HLA-B27 negative
• ESR/CRP is normal range
• EMG in arms shows no nerve damage (I was surprised to find this out, because of shooting pain)
• SI joints OK (in xray)

I had spinal fusion over ten years ago. Didn’t help at all. Doctors said they didn’t ‘see anything wrong’ but did surgery anyway.

Doctor found some stenosis in an MRI of my lower back. Finally something had shown up on an MRI! I had a laminectomy a couple months ago. Unfortunately the laminectomy didn’t help at all. This is really a bummer. I had hope it would help.

My shoulder doctor gave me a cortisone shot in my shoulder. Again, no help.

My rheumatologist put me on Sulfasalazine. He prescribed Sulfasalazine on a hunch I might have undifferentiated spondyloarthritis. It’s been three weeks on it. I’m not really feeling any better.

It’s been over ten years and I nothing has worked. It seems every diagnostic test fails to find anything. It so frustrating. Meanwhile I am in tremendous pain single everyday, and have been for years.

Because I am HLA-B27 negative I guess that means I don’t have AS. But maybe I have undifferentiated spondyloarthritis? What does one do to get to the bottom of their disorder? What tests can someone that is HLA-B27 negative, CRP/ESR normal do to see if they have some kind of immune arthritis (undifferentiated spondyloarthritis??)? Has anyone been in my boat where they have not improved with any treatment nor had any luck getting a diagnosis? It is puzzling how I can be in so much pain and yet no doctor can find anything wrong.

I think my rheumatologist might put me on Methotrexate next. I guess if I improve on it that’ll be sort of diagnosis there.

My condition is getting worse this year and I am trying to find answers. Any suggestion would be so appreciated.

WELCOME, GeorgeIII:



Not really; B27- can mean the test was bad or You have some other genetic disposition for AS like HLA B60, B39, B7CREG, etc.

But You might not have AS at all, EXCEPT:

The fact You have some IBS, along with crepitus (noisy joints), shooting pains, skeletal pain, ROM issues, stenosis, and steroid helped.

There is probably no difference between the cause and mechanism of uDiff, PsA, Crohn's Disease, and AS--that is the only difference is one of individuality, what Hippocrates observed quite a few years ago!

The problem I have is You did not mention "morning stiffness" and Your pain is constant. In AS we have severe morning pain and stiffness and two early definitive signs: Variable pain and asymmetry.

Will reply with more later,

HEALTH,
John

My doctors are suggesting trying a TNF-blocker, DMARD basically to "see if it will work". In a way I guess that would be a "diagnostic test".

For a person with HLB27 negative / normal blood markers what diagnostic tests can actually be done?

If a test could be done, arthritis could be ruled out as a cause. But this seems very tough to do...

Yea, don't have "morning stiffness". More like have constant 24/7 stiffness. Also my pain is symmetric. Both shoulder joins are plagued with crepitus and pain. Both hip joints are tight, etc..

So some symptoms match with a AS/uDiff diagnosis but other don't.

George - you sound so much like my and my case., Most surgeries to fix the kind of pain you are talking about, will not help all that much. And it i9s not surprising that X-rays do not support your case.
When I finally started to tell Drs and health care about being HLB negative- but having the other markers, it was like oh, ok. soon you will read as much as some of them and you will be able to explain of what your body is doing.
Arm yourself for unbelief- but go about taking charge of your health as if it were a certainty. Of course keep reading and try and find a physician that supports your journey.

You said prednisone helped some.

I have no blood markers and the radiography was not that remarkable, however, my symptoms are pretty classic for inflammatory arthritis...I can check lots of boxes....and so based on my symptoms, they first tried NSAIDs....Aleve helps some but not nearly enough and soon side effects come...methylpred were my "magic happy pills", but of course taking them too often is not good overall longterm...

so then I was put on Humira...and that has truly been a miracle drug.

It sounds like your doctors are convinced enough to have you try a biologic.

You asked "what do you suggest."

I suggest trying it. So long as you are respectful of the biologics, they have helped a great many of us greatly.

You will get all kinds of advice. That is mine.

And don't worry what kind of inflammatory arthritis it is, there is a lot of overlap in symptoms and the biologics help both RA and the spondys.

Hi, GeorgeIII:

You do have some kind of inflammatory arthritis, most likely late-onset AS or possibly PMR (PolyMyalgia Rheumatica).

The tnf-a inhibitor should help.

Until You begin, however, a food and symptom diary could be very useful. I know someone with PMR and currently have suspicion that the basic cause is still identical with that of AS.

It would be no surprise that 25-35% of AS activity is totally unrelated to genetic predisposition, and instead is entirely environmental...which is mostly DIET.

THE PROBLEM with a type of arthritis that is not as severe as AS is that the patient may not want to participate enough to eradicate the symptoms, but would, instead, rely upon drugs more. When my AS was mild, I suppose that I fit this category and the worst mistake I made was to begin taking those old (non-selective) NSAIDs because they turned my mild case into an extreme one!

I am certain the biologic drugs will not do this, and if You find one that works for You that might be all You need, but if You want the digestive issues to decrease, Carol Sinclair's "The IBS Low-Starch Diet" is an important reference and regimen.

HEALTH,
John

Just ordered "The IBS Low-Starch Diet" on my Kindle. Willing to try anything including a diet change. Going to push for getting Humira. Unfortunately have to wait until November for this "6 weeks of Sulfasalazine" trial to end. Which so far, is doing nothing..

Just got bloodwork back from Rhuemy (https://picnichealth.com is great for getting your medical records). Seems like he tested me for Hep C and Hep B? Also he did a chest xray for cardiopulmonary disease. Not sure what those have to do with spondyloarthritis? Maybe time to get another opinion. Anyone recommend a good rheumatologist in San Francisco?

Will report back when I get some Humira, in the meantime going to give this diet regimen a try..

I haven't been on here in years but the prior than ten years ago I had 2 neck surgeries back pain and stiffness all adult life, past ten years Ive had two back surgeries, both knees total replacement, shoulder. More than 7 bouts of iritis, so doc more than ten years ago told me "well you have 4 indicators of as, iritis, hlab-27 pos.,fused ribcage,constant back pain "but I don't think you have as because its a man disease so I just gave up and now docs are saying with all the spine damage all that can be done is pain meds 10 Lortab every 4 hours all day everyday, and they don't take care of all the pain. Hope you get all the answers your looking for. Connie

connieb:

Shameful! I would have told You that it could be nothing besides AS and go back and SLAP that damn Theodoric of York...



HEALTH,
John

Thank connieb: Sorry to hear that. Hope I get some answers soon too. I have been extremely underwhelmed by Medical professions too. One told me to get a shoe lift. *shaking my head*

I'm still not 100% sure I have AS. (Don't have "morning stiffness" — I have constant stiffness, constant pain. All of which is symmetrical.)

If NSD, Sulfasalazine, (and Humira if I can get it) works, that'll mean my pain is caused by AS / undifferentiated spondyloarthritis — as Humira and Sulfasalazine woudn't help with mechanically caused pain issues I'm assuming?

If not, I guess my quest for answers continues...