Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Newcomer with Questions

Hello all,

Nice to meet everybody. I hope I do not disturb the community with my questions; however, I am concerned, and want to share my story and see what members of this community think.

I haven't been diagnosed with AS, but I've had back pain from neck to lumbar and all places in between fairly steadily since about age 18; it was always intermittent, with a good bit of time passing between attacks, and never anything debilitating. Well, about July 2008, it did get debilitating -- lower back pain with radiculopathy and I couldn't walk it hurt so much.

Now, I have a family history of AS -- my mom's mom's two brothers have it, as does their father. My mom's mom has some unspecific degeneration of the spine (I just don't know, really, except that she can't hold up her own head), and my mom has rheumatoid arthritis with spondylosis. On top of that, I have two sisters, one with Crohn's Disease, and the other with narcolepsy, which, as I understand, are or may be cousins of the various spondyloarthropathies such as AS.

Anyway, one of the aforementioned great-uncles recommends that I get an MRI, to be sure it's not AS. The radiologist doesn't mention it in his report, only seeing a couple of minor bulged discs. He does see, though, a syrinx in my cervical spinal cord; having that removed helped a lot with the upper neck pain and stiffness and migraines I'd been having. The lower back pain attack only lasted a couple days, and being rid of my migraines in particular and upper back pain for the most part, I discontinued any search for problems there.

But, over the past two years, the lower-back-pain attacks have come more frequently and hung on much longer. I'm in the middle of one such attack now which shows no signs of abating, though it's been 29 days since it began, more than twice as long as any other attack. It began with shooting pains all the way down my right foot; an MRI revealed a significant bulge in my L4-L5 disc, which oral steroids seemed to calm down. In spite of curing that symptom, though, I still have an inordinate amount of stiffness in my lower back, in lines that follow my sacroiliac joints. It gets better and worse with no discernable pattern; some days, it's just the joints around my lower back and hips that ache; on the worst days, my entire body feels terrible -- you know the aches you get when you get the flu? Like that, only without the other symptoms. To top it off, I'm tired, and just plain frustrated.

After the MRI, I was referred to an orthopedic surgeon for further analysis. I'm not sure what to make of the surgeon; I explained to him that this is something that has been ongoing, in particular over the last two years, but he seemed to only be interested in this most recent flameup. He's got me set up to see a physical therapist, but I'm not sure what new things I'm going to learn when I already have and use loads of information on ways to properly move and exercise the back from my earlier physician and surgeon from 2008. The new surgeon gave me meloxicam to take daily, which hasn't been doing crap; I've got tramadol, which helps a lot with my perception of the pain, but it's harsh to come off of it, so I don't take it unless things are really bad. He said I have spinal stenosis, but from what I've read, spinal stenosis is usually a symptom of something else, but he didn't elaborate on what he thought the cause might be.

I suppose I am feeling exasperated right now. I am 27 years old, and would prefer not to have to wait 10 or 20 years for an affirmative diagnosis of anything, and my family history concerns me as well. Do my compaints sound familiar to the early back pain histories of anyone here? I am inclined to get a second opinion from a doc who won't just walk in, talk for 10 minutes, and then leave, not to mention one with a competent nurse (not wholly related; she was just rude and rushed). What do you guys think? If my story sounds familiar, is getting a second opinion worth it? Will it make my situation any more comfortable?

WELCOME, DWK:

I have some cousins who moved to Arkansas in late 60s and my dad visited my uncle there years ago. They were sitting in a cafe and my uncle said to dad: "See that old man filling his own pick up truck?--That's old man Walton." My dad did not know who Sam Walton was at that time, but my uncle scolded--"He's the wealthiest guy in the world!"

Ok, You probably do have AS.

It begins in males most often exactly when it began for You.

AS is HIGHLY CYCLIC in the earliest stages--before NSAIDs have the chance to put us into one long flare while making us less aware they are damaging us.

I don't know why Your uncle decided You need an mri; are either of them HLA B27 positive? MHC HLA B27 is the tissue typing test You need.

You are certainly in the focal box, with sister and great uncles.

No doubt that, after almost ten years You have some stenosis which is common in advanced disease. Almost certainly, an X-ray will show fused SIJs; the hallmark of AS.

Even based upon what You have said, I would recommend doing a fast to get Yourself out of inflammation and You want to break this vicious cycle then go starch-free.

You'll "experiment" because everyone does--it is hard to believe we are on the wrong feed. Then experiment with deep-fried stuff--onion rings, fries, heavily breaded goo...BAD FLARE could ensue.

Keep well away from NSAIDs like meloxicam; these destroy our gut lining--and AS is caused by a bowel germ that You do not want anywhere near Your secondary immune system, once You have achieved remission.

Good Luck,
John

Thanks for the quick reply John. I should mention that prior to any MRI's, I've hade x-ray imaging, too, which showed nothing remarkable, as far as I and the attending radiologists saw.

My mother is positive for HLA-B27. It's a given then that her mom, uncles, and grandfathers are HLA-B27 positive. I do not know if I am.

The uncle in question (my great uncle) recommended the MRI, because when he was my age suffering from low back pain, he said his x-rays looked normal, but they lacked MRI technology at that time.

The diet suggestion is intriguing; it's not unlike what my little sister has to do to manage her Crohn's Disease. Also of note is that I seem to be less hungry than usual in this attack; I'm a large guy, weighing about 350 a month ago. 29 days later, I weigh 339. It hasn't dropped below 340 in a decade. It's not even that I don't feel like eating, I just feel fuller faster. I don't really get it.

Also of note: I just realized SIJ means sacroiliac joint. That's exactly where it hurts primarily right now. I've never had them pictured specifically; I hear a contrast dye is useful when doing that, no?

get off the starch my friend

DWK - Welcome to the KA family. Can't write much this evening as my eyes are jipping me... However. John is giving sound advice. Go to the diet section of the forums grou. Check uot all the infor there. nad give it a try.

Meantime, those NSAIDs (Meloxicam being one) will tear your guts to shreds. Does to most people but not to some, including to a few ASers here on KA. But iin the main, steer well clear of NSAIDs.

Now. MRI. Yes, OK. BUT, better yet, an MRI Saggital ZSTIR as opposed to the standard MRI. MRI S'S picked mine up whreas the standard MRI did not pick anything up! Another ne to think of is the Nuclear Bone Scan. That is great atpicking up Inflammation. Stands out like to Blackpool Tower!

MRI or CT scan with contrast, is best avided. Can throw nasty side effects, apart from which, CT Scan is equivelant to 120 radiographs - too much radiation exposure. Radiologists and concerned medics are a tad leery of rad exposure. Realising now that 'not a good thing'!

Get thee to a rheumatologist. An orthopod aint ging to do mcuh for you at the monent. yes, physio is good, but, ensure that the physio 'knows' waht they are about in treating a spondy...IMPORTANT.

Stretching. Deep breathing. Walking. Need to do this every day.

Oh yes. Not rocket science to say/see that you have AS...!!

Apologies for all typoes, but eyes are scrinching me to ehll this evening. too much sitting at the computer.

Take care -

Molly C (France)
Keeping on Keeping on

DWK

DWK
Welcome to kickas.
If I am correct you have not gotten tested for HLA-B27. When I was diagnosed my doctor did that test and a bone scan. I was very lucky to have had a doctor do those tests because when he asked me my family history I did not have anyone with any arthritis in my family. Lucky me I am the first I guess. ha
I later had an MRI done. I too have spinal stenosis and two other stenosis's. also bulged discs. I have been told that the stenosis's and the bulged discs were caused by the inflammation from the AS.

I know it can be hard for a young person such as your self to get doctors to look past your young age. If your doctor will not do the tests you need try another doctor.

good luck to you
Raquel

welcome!

don't feel like you are "disturbing" the community as much as becoming a part of it, hope you do that!

sounds like based on symptoms and family history like you are correct in your assumptions. if true, a good rheumatologist and consideration of drugs like the biologics sounds like something to consider. but a good rheumatologist should be able to help you, i would think, along with the other doctors you are seeing.

hope we get to know you better. lots of good advice and support here.

Welcome DWK! You will not disturb us! You are family now! I would get to a rheumatologist. Physical therapy is good but a program tailored to AS would be your best bet. SI joint involvement is a hallmark sign of AS. Fatigue is also an indication of an autoimmune disorder. Please keep us informed!!

Craig