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Old 01-24-2012, 12:04 PM   #2
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Re: Looking for lay-opinions, please!

HI Skoozey...I'm Jenny and one of those people who after years and years of OA, developed Ra and then Sjogrens. It was a prolonged period of "development" so I understand your frustration.

I don't think a single week goes by when I don't get asked about the Rheumatoid Factor test and obviously your primary doc doesn't understand it and I suspect your ankle doc doesn't either. So hang in there while I explain it.

There are tests for a disease that are "specific" and others that simply tests for the presence of inflammation, knowing that infection and all sorts of things can cause "inflammation". RF is an early "specific" test for RA(meaning it was developed a long time ago). BUT...and it's a huge BUT....5% of the general population will have a positive RF without any signs of the disease. Up to 25% of those with RA have a negative RF(including me). And in the elderly, up to 20% of the general population has a positive RF with no signs of it. Bottom line is, unless it is a very high positive, it is almost useless and a negative means NOTHING.

The ESR is one of those "non-specific" tests for inflammation but when it gets up to numbers like 56, it means you have a very strong inflammatory problem going on....a lot more than plantar fasciitis would ever cause. You can get numbers up to 30 with a bad cold or the flu and even severe stress but you won't get a 56 without a problem.

The CRP is an even stronger indication of inflammation and your number is rising. This is most definitely NOT from plantar fasciitis. I have RA and mine has never gone over 2 and my ESR has rarely gone over 55.

You need to see a rheumatologist. I take it you never saw the doc who was a 6 month wait. Let me tell you, that is not unusual. They are very busy docs and they take their time with a patient so appointments are few and far between. You should have made an appointment.

One of the realities of life is that there is no rule that you can't get osteoarthritis and plantar fasciitis and bursitis and all those other problems and still get Ra on top of it. I've had 14 knee surgeries and have chronic bursitis in my hips and knees and shoulders, battled plantar fasciitis and tendonitis everywhere(currently battling it in my quadriceps muscles of both knees) and I also have RA. I think that the very slow development of Ra can make you have all those types of inflammation of the soft tissues of the body. For me, they were almost like a precursor to the actual joint problems of RA. My rheumy agrees.

As I said, up to 25% of those with RA are what they call "sero-negative" in that none of the "specific" blood tests for Ra are positive. You need another test that is far more reliable for Ra called Anti-CCP. But again, a certain percentage are still negative, including me. But that does not mean all blood work is negative. Ra affects the entire body and so your blood work should start to show a disturbance in the general well being. I am anemic with a chronic low hemoglobin and hematocrit. My white blood cell count is always slightly high as if I had a slight infection. My ESR and CRP are always up even if at a very low level....but they never go back down which would happen after an illness like the flu.

A rheumatologist isn't just for illnesses like Ra...they can also manage OA and treat things like plantar fasciitis, burisits, tendonitis and other soft tissue things. The difference between a rheumy and an ortho is that they never operate and they know the medical treatment and the drugs involved, as experts.....orthos are NOT experts in medically treating joint problems and should not be used in place of a rheumy. Having done that for years myself, I can honestly tell you, orthos suck at managing OA and it's associated problems(tendonitis, bursitis, fasciitis etc)...they just want to operate. But when all hope is gone and you need surgery, they rheumy won't hesitate to send you to the best ortho on town.

So call that doc back and make an appointment for the medical management of you current problems with an eye to watching you for developing sero-negative RA. Or demand your primary give you a referral...tell him you'll go with or without a referral so he might as well give you one. My doc works out of a group practice called The Arthritis Treatment Center to underscore the nature of their practice....and on their logo is has Muscles, Joints, let everyone know that is what they treat.....the skeleton and everything that holds it together. And on top of it, they are experts in auto-immune disorders, the most confusing field of medicine out there.

As of 1900, there were 2 forms of arthritis...OA and RA. By 2000, there were 100 kinds of arthritic disorders. By 2050, there will be 200 variations of arthritic disorders. Unless you are a rheumy, you have no idea. Your docs are back in 1950's in their thinking on Ra.

good luck............Jenny