Rheumy checking for ankylosing spondylitis & more -- Mini meltdown

[SjoGirl]

Saw my rheumy for my four-month check up. Evoxac working well, but I was in terrible pain today migraine, spine aching, hips hurting and locking up (weather undoubtedly a factor, big front moving through with damp and cool weather now here). While I was unhappy to be so miserable, particularly since I felt terrific most of yesterday, I was glad he got to see me in that condition.

Anyway, we discussed possibilities for pain causes and I told him that my PCP just last week wondered again about anklosing spondylitis. Turns out I was tested for the gene years ago by first rheumy I ever saw. My current rheumy, who blessedly reads everything, said though that the report lacked clarity so he ordered the test again today.

Part of me is praying for a positive so I know what is wrong, but it could be lower lumbar stenosis (which I have). It's getting more and more difficult to climb stairs and even walk sometimes. He ruled out myasthenia gravis, said I'm not really weak.

Because I am having lots of nerve issues rheumy wants me to go back to neurologist and have EMG testing done (I refused due to the pain it causes). If that proves inconclusive or negative rheumy will order biopsy to test for small fiber neuropathy.

Path will either be treat for inflammatory arthritis or potential referral to a spine surgeon.

Oh and icing on the cake, I had blood in the toilet bowl later today. Hoping it's just a fissure or hemmorhoid, not sure I can take much more. Will have to have it checked out those because my sister was recently diagnosed with Stage 3 colon cancer.

Oh, but I don't look sick!!! Sigh.

[aussie mum]

Dear SjoGirl,

You cetainly have a lot going on at the moment. Sending positive vibes your way.

After many years of suffering, I was finally diagnosed Ankylosing Spondylitis in my late 40's.
Just my luck, I did not test positive to the gene marker that is often used to diagnose AS. Luckily, my Rheumy investigated further and a MRI and Xrays confirmed the damage to my Sacroilliac joints. (who'd have thought it would be "lucky" to have spinal damage  )

Like any other auto immune disease, it is possible to be sero-negative. If your blood tests don't back up your diagnosis, please ask your Dr to investigate further.

Wishing you all the best

[jazzlover]

Sorry to hear about all the pain. I hope it lets up soon.

One thing that has helped my joint pain (esp hip and lumbar pain) is going low oxalates on my diet. It really makes a big difference for me. Prior to that, I made progress when eliminating nightshades.

Just a thought.

[SjoGirl]

Thanks all, I just checked my record -- the B27 antigen is present!

No word from my rhuemy yet, but hopeful that this will be a breakthrough that might lead to a different course of treatment. I am in excruciating pain and exhausted from it so praying for some relief.

Oh low oxalates, like chocolate, oh one more things to give up. Thanks, I'll have to face that at a time when I'm feeling better.

[aussie mum]

Looks like your positive blood result will aid your diagnosis and hopefully treatment that helps with your pain.
I'm on Enbrel, which certainly helps but I am not pain free. My desk bound job doesn't help either.

There is a train of thought that a low starch diet helps AS. Sadly, I found it way too difficult to stick to.

Here's a couple of links for AS forums which have a lot of information,

http://www.kickas.org/
http://forums.spondylitis.org/ubbthreads.php?ubb=cfrm

I hope you are feeling better soon.

[Tharrell]

Hi Sjogirl. I hope in your case the HLA B27 will help confirm your case! My 24 year old son has alot of joint pain and his spine shows sheuermann's disease. When his gp tested the B27 and came back positive I took him to my rheumy with very disappointing results! She told me that the B27 gene is very common in healthy population and because he too does not show any positive inflammatory markers, like my daughter with Behcet's and me, he did not have ankylosing spondolitis. Told him to go through live and take iboproven when his back or joints pain him! I don't think it's normal for a 24 year old to suffer from joint pain!
My daughter too was confirmed having the B27. Rheumy said in her case it just confirms the uveitis she suffers from that is part of Behcet's.
So again, good luck and I hope your doctor is smarter than mine. Mine is frustrating as heck!

[aussie mum]

Hi Sjogirl. I hope in your case the HLA B27 will help confirm your case! My 24 year old son has alot of joint pain and his spine shows sheuermann's disease. When his gp tested the B27 and came back positive I took him to my rheumy with very disappointing results! She told me that the B27 gene is very common in healthy population and because he too does not show any positive inflammatory markers, like my daughter with Behcet's and me, he did not have ankylosing spondolitis. Told him to go through live and take iboproven when his back or joints pain him! I don't think it's normal for a 24 year old to suffer from joint pain!
My daughter too was confirmed having the B27. Rheumy said in her case it just confirms the uveitis she suffers from that is part of Behcet's.
So again, good luck and I hope your doctor is smarter than mine. Mine is frustrating as heck!

So, Doctors tell us we don't have diseases because our blood tests are negative but when you test positive to a genetic marker and have physical symptoms of the disease they STILL say you don't have the disease because of some other blood test result. UNBELIEVABLE.

It's no wonder we loose faith in the medical profession.

[SjoGirl]

Thanks Aussie Mum for the links, I'll check out the boards as they might help as I work through diagnostic process.

I am unfortunately not surprised that a positive B27 would not confirm a diagnosis. While presence of B27 is actually rare (only 8% of Caucasians) only 2% of people with B27 present develop AS. There is really no clear answer about who get AS and why: http://www.spondylitis.org/About-Spondylitis/Ankylosing-Spondylitis/Diagnosis.

My PCP would like my other docs to try biologics, we'll see what my rhuemy says after he reviews my MRIs and xrays with the radiologist. I will also be discussing with my neurologist.

FYI it appears that my pain over the weekend may have been due to a virus which is making people miserable with pounding headaches and joint pain. I was a wreck for three days then suddenly felt like my more normally achy self yesterday (thankfully since I had to travel and had a 12-hour work day). Funny how welcome aching was over the extreme pain.

[aussie mum]

Thanks Aussie Mum for the links, I'll check out the boards as they might help as I work through diagnostic process.

I am unfortunately not surprised that a positive B27 would not confirm a diagnosis. While presence of B27 is actually rare (only 8% of Caucasians) only 2% of people with B27 present develop AS. There is really no clear answer about who get AS and why: http://www.spondylitis.org/About-Spondylitis/Ankylosing-Spondylitis/Diagnosis.

My PCP would like my other docs to try biologics, we'll see what my rhuemy says after he reviews my MRIs and xrays with the radiologist. I will also be discussing with my neurologist.

FYI it appears that my pain over the weekend may have been due to a virus which is making people miserable with pounding headaches and joint pain. I was a wreck for three days then suddenly felt like my more normally achy self yesterday (thankfully since I had to travel and had a 12-hour work day). Funny how welcome aching was over the extreme pain.

It appears this virus has travelled world wide, many people I know in Sydney have had massive headaches with joint and muscle pain over the past week or two.

I hope you are feeling better soon.