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Old 10-03-2012, 11:19 AM   #1
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Unhappy Could it be RA?

I apologize if I'm posting in the wrong forum, I'm new here.

I have been battling with joint pain for two years now, and no one can tell me what's going on. My last blood work showed an levated CRP level, and I tested positive for the HLA-B27 gene. In addition, I have a low C3 complement. Lupus and RA blood work came back negative. Bone scan showed no arthritis. The joint pain has worsened and is now in my feet, ankles, knees, hips, fingers, elbows and sometimes my jaws. Fatigue is also a huge problem. Any suggestions or ideas as to what this might be? I've searched the internet daily trying to find something.

 
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Old 10-03-2012, 03:01 PM   #2
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Re: Could it be RA?

Hello and welcome on board!

Unfortunately I am not a DR and cant diagnose you with any condition. But based on my own experience and what I learned during years being ill, I can suggest that the most important thing in right diagnoses and your well being is a good and knowledgeable DR.
I am sure just because a DR wears white coat, doesn't' mean he is a good Dr who cares and knows how to help you.
For many of us here it took years and many doctors offices to finally get right diagnoses and right treatments.
If you know you are not well, you have to change your Dr and if the other one can't advice what is wrong with you, time to move on to see someone else. Just make sure you see doctors in different areas where they don't know each other.
Although I am not a DR, but i know just because you tested negative for RA, doesn't mean you don't have RA. Same if person tested negative for Lyme, doesn't mean she doesn't have Lyme.

It bothers me,that some Drs tell you this, know about this and some go just by test results ignoring experience and new research. When I was searching for my problems, I had to see 3 RA Doctors who told me I don't have any RA, despite the fact I suffered with JRA since age 12. They told me it was when I was young but now I have nothing. Only 3 years later, finally, when I was send to a very good RA in NYC , I was diagnosed with advanced RA with a lot of irreversible damages, lung and heart included, with Lupus and MS.
I couldn't resist and made an app with one of those RA DR who insisted I don't have anything to worry about. I showed him my records, I told him that b/c of him ignoring my symptoms, my RA is gone too far and nothing can be done about it.

He said he is happy for me that I am doing better and that was it. I did it for the sake of his other patients, maybe he will listen to them better.

I don't want you to get discouraged, keep going until you get your questions answered.

Best of luck to you
Moldova

 
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Old 10-04-2012, 05:13 AM   #3
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Re: Could it be RA?

Thank you Moldova! I keep going back to my PCP, who is the one that continues to test for various things. When we got the last results, showing the elevated CRP and positive results for the HLA gene, she sent me back to the Rheumy. I don't understand why the doctors won't listen to the patients, and only rely on test results. I live in pain on a daily basis, but the last time I visited the Rheumy, he said that there's nothing he can do, and suggested I take extra strength Tylenol.

The problem is, this guy is in with "the best of the best", and each visit is about an hour and a half drive to get there.

Have you ever dealt with clinics? There's a Rheumatology Clinic about 75 miles away, and I've thought about going there, but I've not read where anyone has had any experience with clinics. Would a clinic have more up to date information, and be up on the latetst and greatest?

Thanks again for your response!

 
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Old 10-04-2012, 10:56 AM   #4
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Re: Could it be RA?

Hello. You could have Fibromyaliga also. Fibromyglia can cause joint pain also.
Really sounds like Fibromyalgia to me. Have you ever been in a car accident?

 
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Old 10-05-2012, 05:20 AM   #5
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Re: Could it be RA?

Hello No Change! I was in a car accident about 15 to 18 years ago, but not recently. I didn't realize Fibro would cause joint pain. The Rheumy didn't seem to think it was Fibro or Lupus. Since my bone scan didn't show arthritis, he doesn't think it's RA. He doesn't know what it is. My PCP is about the only one that listens and seems concerned that something is going on. It's just finding a doctor that will listen. I'm at wits end.

 
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Old 10-06-2012, 09:38 AM   #6
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Re: Could it be RA?

I honestly don't know much about clinic. I heard some experiences from people, they are very different. Some people feel it's OK, some feel they just a number and they can't see same Dr all the time they come.
If this is a case, it's not for me. I need my DR who I see all the time, who knows my problems, who I feel comfortable to discuss whatever bothers me. And of course, I wouldn't spend my time and money on a dr who doesn't listen and rushes to see another patient before I finish talking.

Like I said before, I saw 3 RA doctors in my state, find their names in "good doctors of America", have many offices, etc. Set myself for disappointment and nothing more. I was crying in a car, was so disappointed.
But I dont give up this easy, I knew in my heart I need more time searching. I believed that I will find a good and carrying Dr anyway.
So I did and can't be happier since. She is a very busy RA Dr, but she will stay with you in a room as long as you need. Every appointment - physical evaluation. If she sees my joints still swollen, even if I say I feel better on the drug I am on, she says it not working for me and we must switch. Every app I have to fill out a form where I must evaluate my pain since last app; how high was the fever and for how long; what I can do and what I can't since my last app and so on.
She keeps it in my file, to compare to my next app when I come to see her.
Nobody ever told me that even if your blood work is fine, just based on obvious symptoms you still may have RA. Nobody before told me that damages to my lungs and heart due to RA, they treated and tested to no end, diagnosing me with some crazy stuff. When she read scan reports, she immediately said, you got advanced RA with "RA lung and heart".
Just because they wear white coat and finished medical schools, doesn't mean they are good and knowledgeable doctors. Do you homework, search as much as needed, don't set yourself for disappointments if you know something is wrong.
When I hear doctors tell their patients that all problems are in patients head, it makes me very upset. I agree that some patients may have problems in their heads, but you are the Dr and you shouldn't tell patients who have real problems that they have nothing, but "head issues". To me this means this Dr is terrible one, he goes the easiest way: blames the victim, not knowing how to help him.

Best wishes to you
Moldova

 
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Old 10-08-2012, 05:22 AM   #7
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Re: Could it be RA?

Thank you again Moldova! I think I will ask my PCP to refer me to a different Rheumy.

 
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Old 10-08-2012, 07:21 PM   #8
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Re: Could it be RA?

I would recommend a Vitamin Panel test .. especially Vitamin D .. HLA B27 positive could indicate spondyloarthritis or ankylosing spondylitis ..

I am in the same boat as you with exactly the same symptoms for the past 3 months ,with no answers .. already done like 10 doctors. . and all the tests under the sun .. but I hav very low vitamin D at 13 . .and have been on those supplements for the past month .. it has had a little impact on me .but not significant.

I hope you feel better and find answers.

 
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Old 10-09-2012, 05:43 AM   #9
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Re: Could it be RA?

Hi Achillez16! I've had my vitamin levels checked. Also, heavy metal testing, as well as Lyme, Gout, hormones, and many more that I can't think of off the top of my head. I think that it part of why no one can figure out what's going on. Everything comes back okay.

I know what you're going through, and if you don't feel better, please stay on top of it. I've been going through this for a little more than 2 years. It's frustrating, and I know at times I feel like I'm losing my mind.

I hope you find answers soon and are feeling better!

 
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Old 10-09-2012, 09:08 PM   #10
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Re: Could it be RA?

ok, you said you have been in a car accident 15 years ago. Were you hurt in your neck area? Car accident can cause fibromyalgia even after many years down the road.

and YES, fibromyalgia can cause joint pain, so I was told.

 
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Old 10-10-2012, 05:43 AM   #11
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Re: Could it be RA?

Hello Nochange! No, I didn't have any neck injuries from my car accident. Broken ribs, and some cuts and bruises, but my neck was never an issue.

This week I've been having terrible pain in my lower back and hips. I have an appointment with a new doctor tomorrow, so I'm anxious to see if they have anything new to suggest.

 
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Old 02-14-2013, 01:40 PM   #12
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Re: Could it be RA?

Hello again! I went to a new Rheumy and after 2 visits, some blood work and x-rays, she diagnosed me with RA. Started me on Plaquenil and an anti-inflammatory. Now my question is, has anyone been on Plaquenil? Did it give you terribly vivid dreams and nightmares? If so, do they eventually stop? Also, how critical are anti-inflammatories? The one I'm on comes with really stern cautions about heart attack and stroke. I know they all have that potential, but this one seemed to stress it even more. I'm afraid to take them.

I hope everyone is doing well!

 
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Old 02-15-2013, 06:26 AM   #13
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Re: Could it be RA?

Hello
I am sorry you are not well and have to start life as RA. I am not sure about dreams, although been on Plaquenil for a while.
This drug is not the worse one when it comes to possible side effects. Try biologics. My RA DR told me that I have to choose either to live life without treatments and die from RA complications or to live dissent life quality if drugs work.
I lived life for many years without treatments b/c of doctors who couldn't diagnose my RA and ended up with " RA lung and RA heart", not to mention every possible joint/muscle/cartridge, etc is damaged. So of course I close my eyes to side effects, survived severe, life threatening reaction to Rituxan, and still continue life on biologics. So far I don't get any relieve but hope is still there. I try not to read about side effects and put all my trust in my wonderful RA DR who knows her stuff. I read that people with mild RA may live many years happily without getting any treatments since not every RA is aggressive.
But in my case RA is aggressive and advanced so I have no choice.

If this is your concern, talk to your DR and explain what bothers you. Ask what will happen if I refuse the treatment, ask how bad your RA and what blood work showed. I do know a lady with RA who lives many-many years with it without treatments and she is OK. I guess every case is different. I am on treatments for many years and have a lot more pain and damages than this lady without treamtents.
Go figure...

Wishing you well
Moldova

 
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Old 02-22-2013, 12:23 AM   #14
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Re: Could it be RA?

Quote:
Originally Posted by choffice3 View Post
I apologize if I'm posting in the wrong forum, I'm new here.

I have been battling with joint pain for two years now, and no one can tell me what's going on. My last blood work showed an levated CRP level, and I tested positive for the HLA-B27 gene. In addition, I have a low C3 complement. Lupus and RA blood work came back negative. Bone scan showed no arthritis. The joint pain has worsened and is now in my feet, ankles, knees, hips, fingers, elbows and sometimes my jaws. Fatigue is also a huge problem. Any suggestions or ideas as to what this might be? I've searched the internet daily trying to find something.
As Rheumatoid Arthritis is an autoimmune disease it causes the pain in joints and other parts of the body. It causes stiffness, swelling and also do causes redness there by leaving behind warmth. It affects the knees, hands, wrists, neck, shoulders, and elbows; also in some cases the entire body is affected. Some other symptoms may be like fatigue. RA symptoms also resemble to that of flu.

 
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Old 04-24-2013, 08:55 PM   #15
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Re: Could it be RA?

R.A. is a trickster. My joints started popping when I was 14. It was mentioned to my doctor at that time but never acknowledged. I was told I had R.A. when I was 27. I had no pain or real discomfort until early twenties. Really I experienced random side effects such as digestive, skin reactions, fatigue and random nerve pain. Most doctors seem pretty uneducated about R.A. or Fibromyalgia. I have taken Celebrex but have not felt comfortable trying preventive. Has anyone had any luck with and of the injections. So far, most people have mentioned unpleasant side effects and not much relief. Since treatment is so costly I want some feed back.

 
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