Update from doctor/need advise help | Arthritis Information

 

Hi everyone,

Just need some advise. Got back and had to take pain meds it knocked me out so I am just now getting my head back on.

Yes, Lovie I've been to 30 doc's, most of them dont know or give me a related DX. This is so frustrating. I just would like to know what i have so I can at least get on with my life, if that is even possible.

Doc told me all my RA test can back NEGATIVE, however he said if I have current swelling in my joints he could DX me with RA, is this real or what?

Since I didnt have any swelling in any of my joints at that time only extreme pain, I dont get the DX, so instead he says i have Fibro.

Granted I hurt all over, but most of my pains are in the joints, sometimes I have swelling and sometimes not.

I do have High positive Epstein-Barr tests, adult Infectious mono, cervical and lumbar stenosis, a t-12 compression fracture and others on their way, IBS, deformed bone marrow w/o cancer, atrophy in the brain, early Osteoporosis ( that was 4 years ago),  Rotoscoliosis upper  Lumbar spine, I have all the symptoms of RA and fight them daily, Heck Hourly.

I have an appt. on March 28, to see at a spine hospital and hope they can decifer all this mess.

Does anyone have any suggestion or other info? Anyone know of a possible DX with all these things. I am suppost to get a spinal tap and more test. YEPPIE

I have the DX of RA and have had it gor 23 years. The RA factor only shows up about 60% of the time in the bloodwork. It has only showed up in mine in the last two years. Just wanted to let you know you may have it. Remember one problem at a time and one day at a time.

what do you mean from referred pain. also on a copy of the test results the name of the test was RA (RF) test is this the correct type of test or are there others, I also had ana- neg, and sed - neg.

Okay, here is the skinny about a dx of RA.  You must meet certain critera in order to qualify for this dx and it does not necessarily include a positive RA factor.  However, if your ANA (anti-nuclear antibodies) are negative, then that means your problem doesn't arise from an auto-immune disease.  That is not to minimize your problems and it sounds to me as if you should be seeing an immunologist rather than a rheumatologist with your positive EB, etc.

There are atypical forms of rheumatoid arthritis but even with those atypical forms, there are certain over-riding clinical signs which must be present.  You can visit a plethora of website which spell out in detail what the clinical criteria is for RA and how it is staged.  But if you are like most of us, you don't really care, you just want to feel better whatever it is. 

Like most of us, we have all seen multiple doctors.  Sometimes it takes years for certain diseases to fully present themselves and in the meantime, we suffer. Immunology and Rheumatology are closely related sub specialties and frequently are together in clinics. 

Good luck to you, if you have a primary care physician overseeing everything, I might ask him/her if an immunologist might be more helpful at this point.  Your spinal problem could arise from a number of sources.  I hope you also have a good orthopedic doctor that you see as well for those problems. 

Hang in there!  The fibromyalgia is a starting point, much is being learned about it although the understanding about it is still sketchy and treatment is sometimes hit or miss.  Keep plugging away and eventually the answers will come along with the therapy that hopefully will provide you with some relief.

The problems in your spine are going to affect the nerves to all the other parts of your body and that is what referred pain is.  Pain might not actually be coming from a specific joint, but from the irritation of the nerve way back up at the top of the ladder, in your spine. 

It might just be that you have to go slowly, and address one thing at a time, eventually things might all fit together like a jigsaw puzzle, one piece at a time, with lots of fiddling, and trying.

Good luck

[QUOTE]However, if your ANA (anti-nuclear antibodies) are negative, then that means your problem doesn't arise from an auto-immune disease.[/QUOTE]

Not necessarily. Not everyone with an autoimmune disease has the ANA antibody. There are many antibodies but researchers haven't identified what they do yet. If you have a high ANA, you don't even necessarily have anything wrong with you.

Or, you're like me, you have a high ANA and they still can't figure out what's wrong. The ANA is a very generic test. It's typically used to screen for lupus, but just because you have a high ANA doesn't mean you have lupus either.

ANYWAY.. back to the RF and other blood tests.

It is common for doctors to run RF (rheumatoid factor), ESR ("sed rate" indicates inflammation), CRP (also indicates inflammation, and more recently Anti-CCP (supposed to be a better indicator of RA than the RF--fewer false positives).

The lack of a high RF doesn't mean that you don't have RA. A good doctor will use your symptoms as well as blood work to diagnose you.

With your back problems, you might want to see a pain specialist. My father has a few degenerating discs in his back. He was unable to do anything for several years until he started seeing a pain specialist. He's had some epidural injections and nerve blocks and is doing much better.

Good luck!Hi Seagoat,

I'm sero-negative - nothing shows up on any test (yet - my doctor says
we've caught it early - doesn't feel early to me) - but starting last Oct.,
my joints started swelling. So my hands are swollen & joints red,
sometimes hot, my feet are swollen - I have at least 8 joints on each side
of my body that are going - and you can see it and feel it. Even if you
have RA, they won't diagnose until they can see something. RA is
something that seems to simmer in some of us for years before it really
explodes. And I respond to prednisone, which is a test of a sort. When I
start a course of prednisone, I feel so good! Almost normal. And now,
when it's wearing off, my toes swell so much, I can't get a shoe on. My
hands hurt so much, I hate to type.

In the end, I don't care what diagnosis they give me; I care that they treat
the swelling & the pain & potential deformity. Good luck!

I and my mother were both RA Factor Negative.  I am also borderline for Lupus.  My Rheumy felt that my symptoms were classic RA...without being positive for the RA Factor. 

Doctor's have to go beyond the NORM...time runs down on us when we are first DX'D with RA or should I say...WAITING To be DX'D. 

I posed the question to my Rheumy when I met her...if this was your body...what would you do.  She told me...get all the oppinions you can and don't stop fighting till you are heard.

SO, MISS SHARON...DOn't you stop fighting till you are heard. Some Doctor's don't listen and or don't know enough.  Keep fighting until you find a doctor that is willing to go OVER and Above to help you.

I did and it has paid off big time.  Do I still suffer...HECK YES...but to know my doc's are fighting to get me whole...is worth the pain for the glory!

Keep your head up and I will be praying for a correct and speedy DX'S!

Roblyn

The reffered pain is exactly as pammy described. I have some issues with my cervical spine (the top portion of the spine) and before it was diagnosed I was being tested for carpal-tunnel syndrome.  I also was being treated for migraines. I didnt know what was causing the headaches but it always started as a tightness in the back of my head and then turned into a terrible throbbing headache.  Once I found out what the real cause was I was able to stop the headaches and other problems. I now recognize the tension in my neck  and shoulders as the early "warning sign". 99% of the time an ice pack or my TENS unit will knock it out. Before I was taking lots of pain pills and muscle relaxers. Now it is only rarely because I catch it quickly enough.

Your body is going to do what ever it can to keep your head straight, even if your neck, back, and hips are all uneven. Your muscles will tighten and that coupled with pressure on nerves will cause you alot of pain.  You should try going to a chiropractor. They can enlighten you to alot of things related to your spine. I was skeptical but having done PT and then visiting a chiropractor I have to say I was really pleased with the result. They both were good and equally effective.  

Dear Sharon,

Hang in there. I had arthritic problems in my thirties that worsened in my forties and fifties. Doctors kept testing me for the autoimmune diseases. All tests were negative. I went from specialist to specialist for years because I had problems in my spine, jaw, knees, hips, eyes ears etc.  I think everyone thought I was a complete hypocondriact especially my family.At late forties I finally got diagnosed with OA. A few years later they added Fibromyalgia. A year and a half ago my blood work showed a positive rh factor. Everything else was normal. Now I have RA and Sjogren's Snydrome added to my diagnosis.  I'll be 60 this summer. The truth is it can take years to figure out what's wrong.  Keep all the medical records from all your appointments in one folder and take it with you to every appointment. I always thought I had one kind of arthritis.  Turns out there are over a hundred kinds of arthritis and they often overlap.

Regarding the ANA...ANAs are not specific..it just means you have created antibodies against your own DNA. That is all.  This particular test is a standard for auto-immune disease diagnoses.   From there, there are a plethora of more specific tests to find out WHICH antibodies are being created...this is how Sjogrens, Lupus, etc. are dxed.   The ANA like CRP, ESR is a generalized test that is nonspecific only showing that you indeed do have antibiodies against your own cells.  The pattern shown in ANAs are also important and gives the physician a 'clue' in which direction to follow for followup anti-DNA tests.  For example "spotted hemogenous" is fairly generalized and not alarming but none the less means there are anti DNA antibodies present.  Other patterns are indicative of things like Multiple Sclerosis or Lupus. 

These are pretty exotic tests and by no means infallible but physicans must have clinical evidence to give a person a diagnosis of one thing or another.  Doctors do not rely solely on laboratory testing, however it does give them a direction to follow.

With RA for example, sero negative RA is common in about 30% of the cases.  However, most people with a dx of RA have at least a mildly positve ANA.  There are physical manifestations that are carefully considered in making a diagnosis.  Without physical manifestations that meet a standardized criteria, lack of other clinical evidence such a laboratory or radiographic physicans find themselves in a quandry.  They cannot proceed with standard treatments for a disease without a minimal criteria being met.  The reason is this would be considered unsupported by insurance companies; therefore, the treatment would not likely be paid for.  Additionally they risk legal ramifications (doncha just love lawyers). 

Sorry to be so lengthy here, but this is a complicated process.  The more we understand what is going on the better it is for us.  Knowledge is power! 

   Hey VT- where you mentioned mildly pos ANA, does that result come back as just -/+  or is it a number? Because what I got from the doc was just a hand written page with the results and he wrote negative. Or do they have to request it a certain way? You know, like the difference between Hcg qual and quant?  I hate being the patient, I feel like we dont get all of the info. I am so used to being able to access everything on a chart.  It is frustrating.
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