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681148 tn?1437661591

Negative Rheumatoid Factors

My doctor has no doubt that I present with FMS symptoms.  I am wondering if it's possible to have FMS without having the positive rheumatoid factors.  I thought I read somewhere that it's still possible to have the problem without the rheumatoid factors.  My doctor found more trigger points than she had found when she did a trigger point test years ago.  She found the trigger points when she was checking my ankles for edema.  I have pain there now, without even touching my ankles.  How do I get her to send me to the right doctor, if I can't get the referral to see a rheumatologist, since I have the negative rheumatoid factors test?  This is really frustrating and puzzling for me, because except for the positive rheumatoid factors, I have so many of the other symptoms.  The question about hyperacusis and tinnitus is something that fits me as well.  I seem to have more hyperacusis than I do tinnitus, too.  And, I have definite MCS, so I have the chemical senstivities as well.
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681148 tn?1437661591
I did just see the neurologist again.  He said that I'm not experiencing hyperacusis, but I am experiencing sonar phobia.  From the brief description I read about hyperacusis, though, it sounded like another name for noise sensitivity.  The neurologist explained that the main difference is that hyperacusis is a more pronounced sensitivity on one side more than the other.  Still, that is good to know.  We're still investigating what might work for the chronic migraines I've had my entire life.  I have a puzzling case, because he thinks I'm experiencing more migraines than I'm aware of.  Since I know I have had these severe headaches since I was a small child, and was never in the e.r. as a child with these debilitating headaches, then this seems reasonable to me.  Just the same, I have had so much noise sensitivity and light sensitivity in my life without noticing the headache and nausea, that this is just as puzzling to me as all the other symptoms.

I did mention to the neurologist other issues I'm having involving the chronic pain.  He did those sensation tests and walking tests when I mentioned the sciatica issue.  That, I knew what I was talking about.  I asked him how much of it is involved with neurology.  This seemed like a reasonable question to me, since I know I definitely have a problem with the sciatica going down one entire leg to the bottom of my foot into the instep.  He didn't notice any loss of sensation, so he feels like continuing chiropractic treatments for that is the correct thing.  Well, I knew that, or any other issues involving the sciatica would've come to light by now.  It was quite painful when I was walking on just the heels of my feet for that test.  I thought I was going to fall.  I didn't  I did mention that it was very difficult.  I was fine walking on my tiptoes.  Thankfully, the office carpeting is well padded.  There is no way I could've walked on my heels without some padding.  I could sure feel my trigger points in my ankles screaming at me to stop immediately with that test, though.  When I was a kid, I could've done just fine without complaints doing that test.

I was glad to see that the neurologist was at least writing notations when I was mentioning the pains, even though we're mainly concentrating on these migraines.  It sounds like we're not at the point where he will order an MRI just yet.

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Avatar universal
If you are talking about Fibro there is no blood test to diagnose it; unless they have just found a way, so the only way is by symptoms, fatigue and trigger points are the most obvious. If anyone one has positive RA or ANA factors then you have another illness such as Rheumatoid or Lupus, just a couple of auto-immune diseases. If there was a medical test that can diagnose Fibromyalgia syndrome then we wouldn't have so many problems getting it treated.

Now I have Lupus too and my Rheumy said that people with Lupus and RA as well as other listed auto-immune disease tend to have Fibro; thankfully I have several high ANA tests, not that I am glad to have the disease, just that it is easier to be treated with an excepted illness. Some patients also can test negative several times and then come up positive or vice versa. Ask your Dr for a referral, if your insurance won't cover it because you had a negative test then just tell them you will pay out of pocket. Be persistent because it's your health at risk.
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665125 tn?1273023924
Hi;

I have been being treated for over 4 years for having all the symptoms of RA with Methotraxate. And will soon be on Remacade, an IV infusion. Although RA antibodies have never been found, this is called Sero-Neg RA.  

My Rheumatologist with 28 years of experience, told me that 30% of patients have the symptoms of RA, some even have severe RA damage, and it has never showed up in their labs. And then some patients, it may not show up until they have had the disease for 10 or more years, some patients labs always remain negitive.  He also said, that he has had a lot of patient that have the RA antibodies and have no symptoms at all.

I had many test done and was monitor for a long time prior to being diagnosed.  It's all about symptoms, inflamation and joint damage.  One of the more conclusive tests is a "Full Body Scan", when I had this nucular medicine dye test, it noted every place that inflammation was present and all joint damage as well.

If I have a lot of inflamation, even while taking an immune suppresant drug such as Methotrexate, Plaquinal, and an anit-inflammatory...   I will still need an injection of a steroid coctail to get rid of all the painful inflammation, yet the Sedrate blood test that measures ones inflammation is normal as well.  Go Figure?  This steroid injection takes 3 days to kick in and then I feel great for about 3-4 weeks!

Take care; Sonflower
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Avatar universal
P.S.  A good Ear, Nose and Throat doc. could help with the tinnitus, but the hyperacusis could be related to some type of cranial blood flow problem...which may be dx'd with an MRI...and sometimes the actual cause is unknown.   :-)
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Avatar universal
Yes...you can have it without having any RA factors...you can also have it with RA factors.  You actually sound like so many other of us here with your mysterious symptoms and no answers.  We all want to know what is causing our poor health and pain...and most of us really have no concrete answers.  Have you had an MRI?  That would be the next step since you've had the bloodwork done up.  Did they check for Lyme?  If your main concern is the tinnitus and hyperacusis, you'd do better seeking a neurologist as opposed to a rheumy.  

To be quite honest, most of us 'ole timers' have been to numerous specialists without much success, other than treating symptoms.  You do need to rule out other things as well that could be causing the like problems.

Take care of yourself.
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