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rileygirl 02-03-2012 07:01 PM

Negative tests, so what is it?
 
Hi everyone.

I am a 40 year old female.

New here and seeking help. I've been experiencing what may be considered migratory joint pain for close to a year.

I have a lot of cracking and popping in my joints. Have always had some, but its gotten a lot worse and does it in joints that never used to. I also have pretty severe joint pain off and on. Some days it will be one or both shoulders and a knee. Other days it will be the other shoulder, hip and lower back. It seems to move around but so far is mostly both shoulders, both knees and left hip. My fingers are swollen, stiff and sore in the mornings, but other than that I have noticed no swelling in the joints.

Over the past 6+ months I've been given anti-inflammatory pills as well as general and targeted steroid injections. The shots help for a little while, but not long.

Just recently I convinced my GP to run some blood tests because the pain is getting worse and worse.

RF - negative
ANA - negative
Sed Rate - Normal (4)
CBC - all normal
Thyroid - normal

Just yesterday she drew blood for a Lyme titer but I won't have those results back for a week or two. I don't remember any kind of tick bite rash, but I do live in rural Oklahoma so its possible.

I also sometimes get sharp shooting nerve type pains down my thighs and forearms, and in my wrists.

Any ideas? She said if the Lyme test is negative, she will refer me to a rheumatologist. Really tired of hurting and not knowing why :(

pearl240 02-06-2012 03:30 PM

Re: Negative tests, so what is it?
 
You can have seronegative rheumatoid arthritis...a quick search on the internet will be helpful (A major (and relieving) difference which medical studies have observed is that patients with seronegative RA have comparably less joint erosion and destruction than patients having seropositive RA. Also the tendency for developing rheumatoid nodules under the skin is less in this disease than the positive population. Moreover, though the other symptoms are same as in the positive group, their severity is less, which too is a bit relieving).
Get familiar with other symptoms of RA that you could be having that would help your rheumatologist make a diagnosis; which he can even if you’re seronegative. Bilateral joint pain, swollen joints, morning stiffness and fatigue are some of the markers that are used to diagnose RA.

rileygirl 02-06-2012 06:17 PM

Re: Negative tests, so what is it?
 
Thank you for your reply!

That is definitely something I will look into. I got a call from the nurse today and she said that my Lyme titer is negative, so I guess that's out.

I really don't have any swelling or visible redness/inflammation in my joints that I or my doctor can see. The only swelling is my fingers in the morning and they "loosen up" after I use them for a while.

I had a steroid shot on Wednesday which has helped the joint pain a lot (temporarily, of course) but the little shooting nerve pains I get in my knees, thighs, arms, etc. are either much worse, or I just notice them more since the joints are relieved somewhat.

Should I have her do any x-rays or wait until I see a rheumatologist and have them check things?

pearl240 02-06-2012 06:39 PM

Re: Negative tests, so what is it?
 
I don't get a lot of redness or swelling, but mainly the shooting pain....toes, ankles, knees, hips, elbows and shoulders. So I understand. X-rays will only help if there has been damage but if you have them done and you don't have damage, that doesn't mean that you don't have RA. It may just tell you more about how advanced you are with the disease. In my case I have Scleritis that did damage my right eye and severe chronic dry eye...both are immune diseases and will be seen in someone with RA.

I walke up and my whole body is stiff, hurting at every joint and extremely fatigued. I have to wait a while before getting up and then I take a hot shower to loosen up. Nothing can make the fatigue go away when I'm having a bad flare. My fingers do swell pretty bad and I can't make a fist....doctors can feel the swelling. It's the first thing that they do at each visit. I'm on MTX and Humira and my flares have been greatly reduced. I still can't walk the mall, but 5 months after starting MTX, I made my first trip to Sam's Club in years and I was able to walk and feel normal.

I think that we each experience the disease differently depending on our own bodies and how aggressive it is. I have talked to some that have damage to their joints, but they don't experience the pain in most of the other joints and some don't experience the severe fatigue.

Keep pushing your doctors for answers and learn what you can before you see the rheumy...if your primary does order x-rays make sure to bring them with you and have the rheumy review them too.

Good luck!!

rileygirl 02-06-2012 06:42 PM

Re: Negative tests, so what is it?
 
[QUOTE=pearl240;4923777]

Keep pushing your doctors for answers and learn what you can before you see the rheumy...if your primary does order x-rays make sure to bring them with you and have the rheumy review them too.

Good luck!![/QUOTE]

I will, thank you! I have already had them print copies of all my labs so that I can have them too.

I wait tables for a living currently, so as you can guess, this is killing me. I've had to miss quite a bit of work lately because I just hurt too much.

Auto1 02-06-2012 06:52 PM

Re: Negative tests, so what is it?
 
[QUOTE=rileygirl;4923767]Thank you for your reply!

That is definitely something I will look into. I got a call from the nurse today and she said that my Lyme titer is negative, so I guess that's out.

I really don't have any swelling or visible redness/inflammation in my joints that I or my doctor can see. The only swelling is my fingers in the morning and they "loosen up" after I use them for a while.

I had a steroid shot on Wednesday which has helped the joint pain a lot (temporarily, of course) but the little shooting nerve pains I get in my knees, thighs, arms, etc. are either much worse, or I just notice them more since the joints are relieved somewhat.

Should I have her do any x-rays or wait until I see a rheumatologist and have them check things?[/QUOTE]

When do you see a rheumatologist? I have very similar symptoms and I have palindromic rheumatoid arthritis. I did have a positive rheumatoid factor and also a very high anti ccp, however, you can test negative and still have arthritis. I can have pain in one joint that can be gone hours later or pain in a number of joints that can last a week. If you do have palindromic arthritis, any x-rays will come back as normal. It does not cause lasting joint pain. PRA is supposedly a "rare" disease, however, I have also read that it could be just new onset RA. You def. need to see a rheumatologist. Your symptoms sound suspiciously a lot like mine did. I did have swelling though (shoulder) as I was unable to move my arms, but there are many types of arthritis and symptoms can vary widely.

rileygirl 02-07-2012 06:22 AM

Re: Negative tests, so what is it?
 
[QUOTE=Auto1;4923784]When do you see a rheumatologist? I have very similar symptoms and I have palindromic rheumatoid arthritis. I did have a positive rheumatoid factor and also a very high anti ccp, however, you can test negative and still have arthritis. I can have pain in one joint that can be gone hours later or pain in a number of joints that can last a week. If you do have palindromic arthritis, any x-rays will come back as normal. It does not cause lasting joint pain. PRA is supposedly a "rare" disease, however, I have also read that it could be just new onset RA. You def. need to see a rheumatologist. Your symptoms sound suspiciously a lot like mine did. I did have swelling though (shoulder) as I was unable to move my arms, but there are many types of arthritis and symptoms can vary widely.[/QUOTE]

I am not sure yet. I see my GP again on the 15th and she will refer me to one at that time, so it could be weeks or longer I guess.

Will keep you all posted here though.

jennybyc 02-07-2012 07:40 AM

Re: Negative tests, so what is it?
 
Chances are you have widespread osteoarthritis. It doesn't have to be RA or another inflammatory arthritis to hurt and cripple you.

When we talk about sero-negative Ra, it means that none of the specific tests for Ra are positive...the Rheumatoid Factor or Anti-CCP. But you will have a raised sed rate and CRP, low hemoglobin and hematocrit(anemia) and a raised white cell count. Sero-negative does not mean no abnormal blood work at all( a common mistake even among medical pros).

But the #1 type of arthritis out there is OA and it can hit early. I started to develop it in my late teens. Research is being done into early on-set OA as a possible disease process in and of itself. By your age, I was walking with a cane due to bad knees. I've had 14 knee surgeries including bi-lateral replacements at age 47. And I had surgery on both shoulders for OA at 54 followed closely by 2 spine surgeries for OA. I find out tomorrow if I have 1 or possibly 2 more spine surgeries again for OA. After that, I think it will be my ankles. OA hurts incredibly badly and is very disabling...and the blood work is all normal.

I don't know why people think if they hurt it must be something like Ra when OA is so prevalent and can be so crippling. I also have RA(and secondary Sjogren's Syndrome) but those developed just in the past 7 years(right after the shoulder surgeries)but those 23 ortho surgeries are all from OA...not Ra. It is OA destroying my joints, not Ra. There are meds to help RA and SS but nothing seems to slow or even treat OA. All they can do is help you with pain and mobility and eventually replace them.

You'll still benefit from the care of a good rheumatologist as they can help to manage the pain and disability until such time as surgery is needed. Mine has a heart of gold and has been a real life saver. Not much he can do but keep me comfortable but he's been great at doing that. So do go. If it's OA or Ra or anything else, you'll need a good rheumy.

Jenny

3peanuts 02-07-2012 08:15 AM

Re: Negative tests, so what is it?
 
Hi, this is my first post but the main reason I am here. We share a lot of similar pains. I have also gone to the dr. and now been referred to a rheum. that I cannot see until March. I am trying to stay optomistic but it is hard. I hope you find answers and keep this updated, I am very curious.

sammyo1 02-15-2012 10:34 AM

Re: Negative tests, so what is it?
 
Hello, sorry you sound like your hanging in limbo there & not a fun place to be.

I too have OA & RA a long with Sjogrens.

What I wanted to say is I had a very good friend tell me long ago Rheumatologists will run more blood tests then you could imagine. She is right, they look for & at a lot of different things, much more then your PCP. Of course they have more knowledge & hear these symptoms & deal with this day after day.

I'm on the newer side to the RA doctor but mine made it clear some forms of arthritis can be hard to DX. There are multiple tests involved.

Just a thought but you may want to start some type of journal or diary to take with you a long with any questions you may have.
Some doctors find this very helpful & in any case it could be to you if things progress.

We forget & be able to look back helps.
With me it was much more then just inflammation or joint pain, its exhaustion & brain fog & all that good stuff. I also started to get rashes, but only in the summer when I'm in the sun for any length of time.
So many little things Ive never thought about, but the RA asked & it clicked.

Yet she was looking at Ankylosing Spondylitis when I first went in but tested Positive in every way for RA.

So if anything try to be prepared for this appointment, it will help & you may be surprised.

I hope you have a good Rhuemy, mine said she knew there was something & would not give up, she also said there was no dragging her feet as pain is pain & I was suffering.
Now I tested a couple yrs ago at my PCPs when all my Chronic pain & spinal problems started & it was negative.

So lots to consider.
The best of luck, Sammy

rileygirl 02-15-2012 01:01 PM

Re: Negative tests, so what is it?
 
Thank you!

I go to my PCP tomorrow to get my referral so I don't know how long it will take to get my appointment.

Thank you for the idea of writing things down. I should have thought of that myself since I have to make lists for EVERYTHING or I forget. I actually forgot to pay my electric bill last month. I had the money, I looked at it, I thought "ok, I will pay that tomorrow"... then I just never did! My memory is awful lately :(

Auto1 02-15-2012 03:52 PM

Re: Negative tests, so what is it?
 
I can relate to that! I can't remember anything unless I write it down - stickies everywhere :) I also have a day planner to keep all of my appointments/meetings as yes, I have actually missed dr appointments before. Yikes!
Good luck, please keep us updated.

rileygirl 02-15-2012 06:22 PM

Re: Negative tests, so what is it?
 
[QUOTE=Auto1;4928549]I can relate to that! I can't remember anything unless I write it down - stickies everywhere :) I also have a day planner to keep all of my appointments/meetings as yes, I have actually missed dr appointments before. Yikes!
Good luck, please keep us updated.[/QUOTE]

Thanks a brilliant idea!

Maybe I can write down symptoms, etc. in a planner as they occur? Then I might be able to notice a pattern regarding times and such.

Will get one tomorrow! (assuming I remember :D )

Auto1 02-15-2012 07:40 PM

Re: Negative tests, so what is it?
 
Yes, I always take a take a list of my symptoms to my rheumatology appts. If left up to my memory, I swear, it would depend upon how I feel that day, and of course I am generally fine when I go. I take a list of dates and the symptoms I had on that date. I always tend to underplay how I have been feeling :( and that helps. I also figure that if it ever came down to a time when I couldn't work, I would have those lists as backup for my disability claim?.

rileygirl 02-17-2012 02:15 PM

Re: Negative tests, so what is it?
 
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".
:mad:

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?


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