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12 hours ago, DizzyGirls said:

Read something by Dr. Graham Hughes (foremost authority on Lupus) and he was asked if someone had a low titer, but was symptomatic in addition to having a strong family history, would he treat them or wait and see what would happen.  He said he would treat.  Always treat in those situations.  So, don't let the medical profession act like there's nothing there.  There just might be and the sooner you get treated, the less damage it will do to your organs. 

I agree with Dizzy. This happened to me. I have Hashimoto's thyroiditis, lupus and RA. I had a positive ANA but the other tests were negative, so I was dismissed despite having joint pains severely. My 3rd Rheumatologist diagnosed me and put me on meds. I am SO much better now, but not before damage was done to my lungs. A positive ANA with nothing else positive is called being sero-negative. When you go to a Rheumatologist and they don't make the diagnosis, ask what criteria they use to make sero-negative diagnoses. You may be surprised to find out that some simply don't make them.

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I have a positive ANA - this time it was 1:80 with homogeneous & speckled pattern. I went to rheumatologist & she tested for a whole bunch of stuff. Everything came back normal (aside from i have c4 deficiency). My rheumatoid factor came back borderline, along with two other tests specific to rheumatoid arthritis. she did another physical exam (I just saw her three weeks ago prior to getting bloodwork & xrays & bone density scan - which came back normal aside from osteopenia which I already knew I had, except now I have it in my hip) she gave me a tentative diagnosis of Ankylosing Spondylitis & a definite diagnosis of fibromyalgia (which is super weird as I have no tender points) I have to do physical therapy, she’s started me on NSAIDs & gabapentin, then hopefully insurance will approve MRI so she can see if there’s already damage. If this treatment fails or symptoms worsen, I will start injections and/or immunosuppressants. She also said I could have rheumatoid arthritis but it’s just not showing in blood test yet. Apparently I am mildly hypermobile. She said autoimmune disorders come in clusters & she has quite a few patients with autonomic dysfunction as well. She said it generally takes 10years for someone to be properly diagnosed as it can take that long for all the diagnostic criteria to be met. She said some people never meet the criteria but they still need treatment to feel better. 

Ankylosing Spondylitis is frequently misdiagnosed as fibromyalgia in women. It been considered a man’s disease. Symptoms in women present differently so doctors don’t suspect it. Ankylosing Spondylitis is a systemic disease that can affect the whole body. @dizzytizzy if your doctors are willing, ask for X-rays of your sacroiliac joints. 

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@Shannoncr: Thanks for the recommendation! Would the xray show anything different than MRI? I've had full spinal MRIs done in the past which showed significant DDD as well as herniations/sacral tears. I was only 32 at the time (now 36) and received many comments that there was a lot of damage considering my young age.

I also have a thoracic syrinx (T4-T10) and have had a synovial cyst (in the cervical spine I think) that showed up a few years ago but wasn't noted on this most recent scan. 

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@dizzytizzy MRIs are way better for diagnostic purposes but if you didn’t/don’t have inflammation in the sacroiliac joints at the time of the MRI it might not show - my rheum told me my X-rays didn’t show much at all but she didn’t really expect them to. She thinks I am early in the disease. I’m not sure if she’s looking for inflammation or to see if ive already started fusing. I just know rheumatologists usually order X-rays of the hands to look for joint erosion but I’ve had chronic low back pain for years but always attributed it to sciatica. I had never heard of ankylosing spondylitis until this visit. I went to see her thinking I had some sort of connective tissue disease (which I still could but AS fits a lot of my symptoms) 

I too have a syrinx! Mine goes from c5 to my thoracic region (I don’t know the number) I was diagnosed with syringomyelia in 2010. Sometimes the syrinx can cause widespread pain, based on where it is. I found this chart a while back. Do they know how or why you have a syrinx? You’re literally the first person I’ve ever spoken with that has one too. 

1BFD07E4-896A-4B1F-906E-2F1BA33F4375.jpeg

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