Ankylosing spondylitis: anyone else?

I have similar problems with no fusions of my spine, but am positive for HLAB7, abnormal RA factor, and mild positive results for small fiber neuropathy. I also have weird pain at my inner heel, SI joints, and left knee tendinopathy. I also have binocular vision issues, chronic cervicogenic headache and migraine with aura that sometimes comes and lasts a month. I'm dying for someone to connect the dots for me. I also have Tarlov cysts that have been reported on MRI imaging, as well as "quiet" MS. I'm starting to thin the Tarlov cysts are responsible for a lot of the unexplained pain, particularly the burning feet pain and pain in sitting, but at least one doctor suspects ankylosing spondylitis. I"m currently seeing a naturopath who has prescribed low dose naltrexone. I'm hoping this helps with at least some of the neuroplastic pain that has emerged from all the other pains being around for so long. It's difficult to find someone who is willing to listen to the whole story, much less read all the reports and view the images. There should be a way to make an appointment with a physician whose job it is to put it all together. I supposed places like the Mayo clinic do that, but that would not exactly be easy to access. In the meantime, I'll keep seeing specialists, learning as much as I can (putting my science degrees to good use), and trying "bandaid" treatments like LDN and PT.

Hello all:
I am new to this chat and have a rare form of CIDP that only affects the senses causing bilateral numbness. It took over 3 years and 6 different neurologists to get this diagnosis. After reading many descriptions of AS misdiagnosis on this chat I am very sympathetic with how frustrating it can be. I have a few questions and a little on my background.
My first cousin has AS after suffering since age 12. Years of different doctors with no diagnosis. Finally a nurse and PT figured it out.., she got the test and results showed the marker. She was in her late thirties and had actually been told by one doctor she was imagining things.
I’ve also been tested many times for the marker but results are negative. Test for B27 is negative. I compare my symptoms with my cousin and they are similar.
I’ve had 3 shoulder surgeries and upper back pain.
She has hip pain, lower back pain and several surgeries.
Both of us have back and neck pain. Both of us have irritable bowel syndrome (IBS) I cannot turn my head from side to side very far. She has difficulty walking.

My second diagnosis is osteoarthritis. Every doc I’ve worked with says wow that’s the worst osteoarthritis I’ve ever seen. (Well, maybe it’s the wrong diagnosis?)
I’ve read on the Mayo site that there is a second classification of AS where the marker is not present or cannot be detected … but symptoms are similar.

Has anyone gotten a diagnosis of AS with no corroborating test results?
I apologize for the long post. I’ve been searching for answers most of my life.

For those seeking pain relief, I’ve found that IVIG stops the back pain. (A serendipitous discovery that is meant for CIDP actually stops back pain too). I also have found that outpatient epidurals and RFAs (radiofrequency ablation) stops pinched nerve pain in the cervical spine and is much less invasive than spine surgery and you walk out same day. A good Physiatrist will specialize in this. It’s not a cure but can last 6 months to years.

MRIs show my spine is fusing. I work with a Physiatrist to stop the pain. Meanwhile I keep on searching.

@bsexton - welcome to Mayo Clinic Connect. You've been through a long journey to get to your diagnosis.

A couple of other discussions on Mayo Clinic Connect you may want to check out, if you've not already, are:

- CIDP (Chronic Inflammatory Demyelinating Polyneuropathy) https://connect.mayoclinic.org/discussion/cidp-chronic-inflammatory-demylinating-polyneuropathy/

- CIDP diagnosis https://connect.mayoclinic.org/discussion/cidp-diagnosis/

- IBS challenges https://connect.mayoclinic.org/discussion/ibs-1/

Fellow members in this discussion such as @jdp3 @terrez @leannestork @msmcecelia @jenniferhunter may have some input on whether they personally have gotten a diagnosis of AS with no corroborating test results or if they have heard of situations like that.

How is your pain today?

@lisalucier

Pain is a 9 on scale of 10. I will check out the posts you mention.

Bonnie

@jdp3
You should get some pain relief from LDN but it can take up to 2 months before seeing the full benefit.

@lisalucier Hi there.... I am in Australia and our "Titles" can be a little different.
I had a spur grow from C6 into my spinal cord so with 2mm to work with the cut it and pulled it out very carefully. What is left behind is the following.... just incase it helps .... Don't look down at your phone or ipad for too long.... or even a computer. Keep the sides of your neck muscles supple because it makes a huge difference on the "pull" at the base of your skull. Do not lift bags of groceries or small children. Bowen Therapy changed my life, and also purchasing a car that has Air bag suspension. Our neighbour had a 2017 Jeep... huge huge difference. Don't walk the dog with a lead on... i go out the back of our block in the bush now ... our own land. Nerve Blockers and a couple of ablations are life... i have mine once a year in Occipital Area and also my lower back. Apologies if i am barking up the wrong tree but i assumed this is why i was tagged in this thread... take care everyone

Hey, I also have ankykosing spondylitis and DISH (Forrestiers Disesse). I have a team of rheumatologist, pain management, primary care, and PT all working in lock step. Continuity of care is paramount and ensure that every Dr gets every other Drs office notes. Look into biologics, supplements, anti inflammatory diets, stay active, don’t baby flare ups, work and move through them. I also had a left THR, (4) knee surgeries, (2) back surgeries, and a plethora of pain management interventions. From injections, pills, ablations, etc. Anyyhing is better than doing nothing. Research what works best and then see what works for you

@therealcrp307 - if you've not checked out this Mayo Clinic Connect discussion already, you might be interested. It's been ongoing for a long time with many posts.

- DISH (diffuse idiopathic skeletal hyperostosis) or Forestier's https://connect.mayoclinic.org/discussion/dish-disese-diffuse-ideopathic-skeletal-hypertrophy-or-foresters/

@bsexton
I am very sympathetic to your struggles.
My rheumatic issues started in high school.
I was finally diagnosed with Ankylosing Spondylitis at age 53, at Mayo MN.
After decades of painful inflammatory issues, and after surviving two horrendous, extremely painful systemic attacks within a 3 month period, I referred myself to Mayo, Rochester MN. I initially needed to see Internal Medicine; they sent me to Rheumatology (the same day) which was the first time in my entire life that I met with a provider, (especially a rheumatologist) who listened and understood!
I am HLA-B27 positive. However, this test result only meant something to Rheumatology at Mayo in Rochester MN; many other providers ignored my positive HLA-B27 result, they continually ignored my chronic inflammatory painful flares, as well as, ignored any/all diagnostic tests,
At the end of your post you mentioned that your spine is fusing. From everything you described, you probably have Ankylosing Spondylitis.
Depending upon where you reside, I’d strongly recommend visiting a Mayo Clinic. They have major clinics/research centers in Minnesota, Florida, and Arizona.
Being your own health care advocate is difficult, and many providers seem to be inept, especially in regard to autoimmune/auto-inflammatory diseases.
I highly recommend Mayo in Rochester MN. (There are hotels within walking distance to the medical campus, if needed).
Best wishes.

Thank you @denise61 for your post about being your own advocate. I have had worsening left sided thoracic spine pain since 2017 and now it is on both sides and higher up in my spine that it has ever been. I have never tested positive for inflammatory markers and so my rheumatologist abroad said that it isn't inflammatory arthritis. I had a CT a few years back and had ankylosing in T10 on the left side. Still no inflammatory markers. As of last year, a CT showed bilateral ankylosing in T10/T9 and fibrosis in both lungs (apical points?). The pain is aching, burning, and this last week, sharp with breathing, swallowing, yawning, twisting, reaching, et al. The rheumatologist just said, "sorry, we don't know what it is since you don't have inflammatory markers" and sent me on my way. Additionally, during this last year, I have also started having dizziness and balance issues and had an MRI of my brain and have 3 schwannomas, but tested negative for the NF2 mutated gene. The neurologist said they don't know why and that there is nothing they want to do but worry not because schwannomas are slow growing. Yes, they typically are, but two have already grown faster after 4 months. I am now moving back to the US and applied to the Mayo Clinic in Rochester. *Fingers crossed I can get in* I tend to think that we know our bodies and while there are physicians who really care about their patients and are curious, there are also those who don't have the time or curiosity and so we must advocate for ourselves. Best of luck to all. <3