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Old 02-17-2012, 09:25 PM   #16
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Re: Negative tests, so what is it?

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Originally Posted by rileygirl View Post
Well, now I feel like I'm getting the brush-off from my GP

She said that since my tests were all negative, she doesn't see a need to send me to a rheumatologist or any other specialist. It is just pain from "wear and tear" on my joints from my job. Disregarding the fact that the others at my job don't have this problem and that my symptoms happened very rapidly just this past fall. I went from having only an occasional ache or stressed tendon, to hurting all over, all the time.

She did say she would schedule some kind of nerve test but only for my "carpal tunnel" symptoms.

Other than that, I'm just supposed to keep taking the diclofenac and tramadol and "think about finding a different job".


If jobs were that easy to come by, I wouldn't be in the one I've got. Am I overreacting? I really feel like she's just brushing me off.

What would you all do or think?
I went back and read your first post, and your symptoms are very similar to mine. My pain started in my hips and jumped around. I was ignored by my endocrinologist and finally had a severe episode where I could not move my right arm due to swelling/excrutiating pain. Saw my pcp - nurses assistant. She wanted to send me to a rheumatologist. Went home, got a call later that evening the doctor reviewed my chart and they did NOT want to send me to a rheumatologist. Few months later, it happened again. This time saw my pcp who did send me to a rheumatologist. My labs were positive, except my esr and crp have never once shown any inflammation. But many people having sero negative RA. It absolutely sounds to me like you need further evaluation. I would call around and see if any rheumys accept new patients without a referral. If that doesn't work I would find a new pcp! I had a positive Rheumatoid factor, also had a positive anti-ccp. Wonder if your pcp could order the anti-ccp for you? The one thing I have learned from being ill for a long time (have hashimotos and narcolepsy, diagnosed with RA this past year) is don't take no for an answer. Your symptoms do not sound like normal aging and if you do have RA or some form of RA, it is important to get treatment sooner rather than later to help prevent joint damage.
Also, please do an online search for palindromic rheumatoid arthritis. Symptoms are very migratory. Good luck!

Last edited by Auto1; 02-17-2012 at 09:28 PM.

 
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Old 02-18-2012, 06:48 AM   #17
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Re: Negative tests, so what is it?

You know your body best. NO matter what any test or doctor says period.
Swelling even in the fingers is not normal. I have the same & its grown more & more painful.

This is in no way normal & I'm surprised she would not refer you, as RA is one of many forms of athritis, not to mention other conditions outside arthritis that RAs test for.

Your going to have to become your own advocate & tell her you know something is wrong & its progressing. You really feel the need to see a specialist as it impacting your quality of life here.

A lot of people with RA & different conditions have Carpal Tunnal.
Your not overreacting to be in pain or ache daily is not normal for a 40yr old, this is around the age my problems started also.


I'm a little surprised she is not referring you knowing all the conditions out there. There are a large number of people that test negative also as I'm sure you were already told here.

I'm confused by your PCP. Surely she knows this is not normal & if it was your job you would know it. Somethings progress rapidly & you have no clue whats going on. It wrong of her to play with your health.

Perhaps if you take some type of journal in on days while working & off work.
Be sure to have your worst days & pain, anything that limits your daily activities & Range of motion, quality of life, ect....

Any family history of arthritis, auto immune's, anything? That should be enough to get you an evaluation. You may want to put it like that "I feel something is wrong & would feel much better with an evaluation from an Rheumatologist".

With a patient coming right out & asking it can be harder to ignore, or she may put a time limit on it. If your not doing better or see any progression in so much time you know? Its only been a couple yrs my RA feels Ive had mine, before that was spinal injuries, & I am miserable. I hate to think of anyone suffering when reaching out for help.

Most specialist want a referral so its best to try to get one. If she wont & you continue to feel this way its best to find one who will.
I wish you the best & God bless, Sammy

 
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Old 02-18-2012, 01:57 PM   #18
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Re: Negative tests, so what is it?

Thank you for your advice. I am supposed to see her again in one month (after the carpal tunnel test, I assume). I am going to write down everything that happens between now and then and likely insist she refer me. If not, I will find someone who will.

She is a nurse practitioner, older lady who works for an older male doctor. Maybe they are just old fashioned or set in their ways?

My maternal grandmother had RA which set in when she was in her 60's. Her sister had it in her 30's. I don't know much about my dad's side of the family. I do know my dad will need a hip replacement within a few years but I'm not sure his exact condition.

Even if it is "just OA" as she seems to be saying, wouldn't it still be better to be evaluated and treated by a rheumatologist? Maybe an x-ray or two at least?

 
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Old 02-19-2012, 12:43 AM   #19
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Re: Negative tests, so what is it?

I don't think it's "just osteo", however, yes, whatever it is needs to be seen/determined by a specialist, especially given your family history of RA. Good luck.

 
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Old 02-19-2012, 05:49 AM   #20
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Re: Negative tests, so what is it?

That should be enough to be recommended. Family history & symptoms.
Can you bypass the NP & see the doctor?
You have the exact same family history I have. Not that that means you have RA, just ironic.
The NP knows this?

Yes there are other tests that can be done. Sure sounds like RA but then again I tested negative yrs back also.
Now a whooping positive with other factors.

Good plan, one month document things, journal it or diary. Watch for swelling & stiffness a long with pain.
Any kind of rash? I get one but only from the sun & only the past couple yrs. One of the many questions a Rheumy will ask.

Fever? No fevers here, Exhaustion or just tired more then normal?


There are braces sold at the pharmacy for CT. I wear them as a last resort. They have padding above the thumb & seem to help me at times.

I tested positive for CT after my spinal surgery & the surgeon wanted to rush me over to a hand surgeon. No way. I remember the Physical therapist telling me she has people coming back for therapy after this surgery. She feels the majority of people still have problems.

Remember Carpel Tunnel can be secondary so don't let them go sending you off to another doctor until you see the right one first.

I have a feeling you'll be in a Rheumys before long. Do yourself a favor & start looking for a good one. If you do have need for one you'll want one that you like & have faith in. Trust me there, he or she will become a part of your life.

Let us know how it goes.
God bless, Sammy

 
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Old 02-19-2012, 02:41 PM   #21
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Re: Negative tests, so what is it?

Thank you Sammy!

She did recommend I wear the CT braces at night so I've done that the last 3 nights but so far haven't noticed any change in the morning finger swelling and stiffness. I did read that CT can often be a symptom of another underlying problem rather than a diagnosis in itself for hand problems.

No rash that I know of except the little red bumps on my upper arms and thighs which I believe is http://www.mayoclinic.com/health/keratosis-pilaris/DS00769

I do have very low-grade fevers sometimes. My temp naturally runs about 97.5 so it never shows as a "fever" since its not always above 98.6

I know the RH clinic at a nearby hospital requires doctor referral. I don't know about the other ones listed on my insurance but they are a 2 hour drive each way.

I am definitely going to insist on a referral though when I go back in a month. If not, I will find another doctor who will.

 
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Old 02-20-2012, 06:59 AM   #22
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Re: Negative tests, so what is it?

Stick to your guns. As I said Rheumys look for all types of Arthritis & conditions that I am assuming PCP's would never even consider.

If your gut instincts tell you something is wrong then you need to follow that.
I'm amazed at how quickly Ive progressed. The thing is to diagnosis & treat before damage & pain progress.

The RA doctor will do much more blood work & tests as needed, or they should.
They should be going by your symptoms & continue looking at possibilities even if your BW comes back negative for RA.

The comment "this is all work related" would irritate me. As I assume you would know if that was the case. I'm sure you have days off.

Be sure to have all your symptoms & concerns documented.
Even if there is only swelling in say the hand of a finger that is enough for concern. Its not normal & my RA said I should have been sent to her when it first appeared. Now remember I was tested by my PCP & it would have been no more then a couple yrs before the swelling started.

Ive come across others testing negative for RA several times. You would not be the first, yet the symptoms & pain are enough for seeking out the opinion of an Rheumy.

I'll keep my eyes & ears open for you. As Ive been there, done that & its not fun. Not knowing & wondering can become as difficult as the pain & symptoms.

There is no reason with your symptoms, family history & progression to be denied a referral. Even the NP should know there is more then one condition & disease that can cause these things & they are not equipped to deal with this.
God bless & good luck, remember to keep us updated.
Sammy

 
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Old 03-14-2012, 07:43 PM   #23
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Re: Negative tests, so what is it?

Well I finally have an appointment set up with a rheumatologist for next week.

I saw the neuro on Monday and he did an emg and nerve conduction tests on my hands and arms. He said I didn't have carpal tunnel and nerves/muscles reacted normally to the shocks.

He said it seemed more rheumatological from what I told him of my issues. So when I left I called my doctor's office and demanded they refer me!

So I have an appointment set for next week. Going to go over my notes and try to summarize all my issues into a list. Otherwise I know I will forget things once I'm in there.

 
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Old 03-30-2012, 06:14 AM   #24
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Re: Negative tests, so what is it?

I have been reading your thread here since you first posted it rileygirl and am wondering if you made it to the rheumatologist? How did it go?

I'm in limboland also with 18 months of migratory joint/muscle pain along with fatigue and swollen fingers and I'm convinced it's some sort of inflammatory arthritis.

Let us know how it goes. :-)

 
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Old 03-30-2012, 03:45 PM   #25
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Re: Negative tests, so what is it?

Sorry for the delay in answering. Have had some family emergencies come up recently.
I did just get to the doctor this past Wednesday. He drew samples to repeat the tests done by the regular doc as well as other tests. He also took x-rays of my hands. I am supposed to go back in 2 weeks.

I assume he may know more once the results are in, but he said he is looking at rheumatoid arthritis based on symptoms, x-rays and family history.

For now, he told me to stay on the diclofenac and tramadol and gave me 15 day regimen of prednisone tablets to take.

 
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Old 04-11-2012, 08:32 AM   #26
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Re: Negative tests, so what is it?

Rooting for you rileygirl. Your symptoms sound similar to mine and I am just your age as well *and* my symptoms started about the same time yours did. I was just diagnosed with seronegative RA last week on Monday. I have no inflammation showing up in my blood work. None what so ever, on any test. My rheumy has seen first hand though the swelling in a few fingers and a knee. My pain gets worse in both shoulders, both elbows, left wrist, several fingers and my left foot. She put me on prednisone 15mg a day for two weeks and I improved so much that that clinched the diagnosis for her. Plus my eye went haywire back in June with Iritis and some other stuff. So even though my bloods are telling one story my body is telling quite another. When you have swelling and your eye goes bonkers with inflammation it's obvious there is inflammation regardless of what the tests say and I'm so glad my rheumy saw things that way.

Oh and I have no morning stiffness! I thought for sure that would delay my diagnosis. I get stiffness in the middle of the night but by morning I'm not stiff, just very sore and beat up feeling.


With the right doctor (rheumy) you should be ok diagnosis wise. Some docs depend heavily on the results of blood work for diagnosis while others go by the patients medical history, current symptoms and take the blood work into account but are not dependent on it. You have a family history correct? I do not. That tells you something. If this doc doesn't help, find another. You are under no obligation to take one persons word as gospel.

I've been reading your thread with interest and would love to hear the outcome of your story. Please keep us posted.

 
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Old 04-17-2012, 11:03 AM   #27
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Re: Negative tests, so what is it?

Sorry for the delay. I haven't had regular internet access the last few weeks.

I went for my 2nd appointment last week. I improved a lot on the pred, then started with returning pain and stiffness in my fingers and knee pain when I started tapering off of them.

He is treating as seronegative RA. I have just started on sufasalazine along with the diclofenac and tramadol (and omeprazole). I am supposed to go back in 4 weeks to see how the sulfa is working.

Any experience with this drug?

 
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Old 05-06-2012, 10:25 AM   #28
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Re: Negative tests, so what is it?

Mine started insmaller joints and is now moving to larger ones too. Wed rate was slightly elevated and everything else was normal with the exception that I am slightly anemic. Waiting on RA and Lips panel to come back and a protein or lipids heart test or something like that. Not the normal lipids test. Will keep you all posted. Good luck and when I get these results back I will post the results.

 
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Old 05-06-2012, 10:27 AM   #29
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Re: Negative tests, so what is it?

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Originally Posted by rileygirl View Post
Sorry for the delay. I haven't had regular internet access the last few weeks.

I went for my 2nd appointment last week. I improved a lot on the pred, then started with returning pain and stiffness in my fingers and knee pain when I started tapering off of them.

He is treating as seronegative RA. I have just started on sufasalazine along with the diclofenac and tramadol (and omeprazole). I am supposed to go back in 4 weeks to see how the sulfa is working.

Any experience with this drug?
My daughter took it for a couple of years for ulcerative colitis. We never had any problems with the sulfasalizine.

 
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Old 05-06-2012, 10:31 AM   #30
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Re: Negative tests, so what is it?

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Originally Posted by jdcatt View Post
Rooting for you rileygirl. Your symptoms sound similar to mine and I am just your age as well *and* my symptoms started about the same time yours did. I was just diagnosed with seronegative RA last week on Monday. I have no inflammation showing up in my blood work. None what so ever, on any test. My rheumy has seen first hand though the swelling in a few fingers and a knee. My pain gets worse in both shoulders, both elbows, left wrist, several fingers and my left foot. She put me on prednisone 15mg a day for two weeks and I improved so much that that clinched the diagnosis for her. Plus my eye went haywire back in June with Iritis and some other stuff. So even though my bloods are telling one story my body is telling quite another. When you have swelling and your eye goes bonkers with inflammation it's obvious there is inflammation regardless of what the tests say and I'm so glad my rheumy saw things that way.

Oh and I have no morning stiffness! I thought for sure that would delay my diagnosis. I get stiffness in the middle of the night but by morning I'm not stiff, just very sore and beat up feeling.


With the right doctor (rheumy) you should be ok diagnosis wise. Some docs depend heavily on the results of blood work for diagnosis while others go by the patients medical history, current symptoms and take the blood work into account but are not dependent on it. You have a family history correct? I do not. That tells you something. If this doc doesn't help, find another. You are under no obligation to take one persons word as gospel.

I've been reading your thread with interest and would love to hear the outcome of your story. Please keep us posted.
I think the three of us are all headed down the same road. I am just worried my new doc relies on bloodwork.

 
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