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    Old 09-21-2015, 07:53 AM   #1
    zipster
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    Any ideas?

    I am a 46 yr old female and i haven't been well for 14 yrs and had all kinds of tests over the years, i saw an immunologist and he did lots of tests. My results were mostly ok apart from a positive ANA and my ccp antibody was weakly positive and the IgM was slightly raised. My rheumatoid factor is always raised and i was mildly lacking Vit D,Ebv IgG was reactive. Obviously somethings going on but nobody ever sits down and looks at the whole picture and gives me a diagnosis.

     
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    Old 09-22-2015, 12:25 PM   #2
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    Re: Any ideas?

    Zipster, After 14 years, you would think your Dr would have a diagnosis and offered you treatment. Basically, the RF and anti-CCP being positive would indicate rheumatoid arthritis, and specific treatment for that would probably help you and prevent joint deformity/destruction. The ANA being + can occur in RA or some people can have both RA and lupus, but that diagnosis is based on specific signs and symptoms. The EBV IGG being elevated simply means you have had that viral infection in the past. By itself, it doesn't mean you have current infection, and 85% of adults (in US at least) have had EBV virus, whether they knew it or not. So I think the best plan is to discuss treatment for RA with your Dr. and discuss the meaning of the +ANA, whether it is just part of the RA or means something else in addition. I wish you luck and hopefully feeling better in near future.

     
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    Old 09-23-2015, 01:13 AM   #3
    zipster
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    Re: Any ideas?

    I have saw 2 rheumatologists who both said i don't have Rheumatoid Athritis and then that's it. I have only ever been given m.e/cfs as a diagnosis. I have saw a immunologist and gastroenterologist and they did loads of bloods and still no answers.

     
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    Old 09-23-2015, 03:03 AM   #4
    Marypat0613
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    Re: Any ideas?

    My rheumatologist told me on my very 1st visit that a pos RA factor was not necessarily indicative of RA. That all it meant was that I def had an auto immune response going on & more tests were needed. Then he saw my result....589. He still did the others tho. The ANA, CCP, & CRP. These are all tests which measure antibodies & inflammation in the body & help the dr make an accurate diagnosis (along with others & a history from you). If the Dr doesn't listen to you and do the lab work then switch. I always recommend a board certified rheumatologist. This is my suggestion as my friend went 4 yrs misdiagnosed before she found out she had lupus. She had a lowly elevated RA factor & I kept trying to tell her based on her symptoms it sounded more like lupus then RA... Now she on proper treatment & feels much better...

     
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    Old 09-23-2015, 06:08 AM   #5
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    Re: Any ideas?

    I have just had bloods done this morning to test for Lyme but not holding my breath because i know they aren't reliable either.

     
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    Old 09-23-2015, 06:17 AM   #6
    Marypat0613
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    Re: Any ideas?

    Quote:
    Originally Posted by zipster View Post
    I have just had bloods done this morning to test for Lyme but not holding my breath because i know they aren't reliable either.

     
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    Old 09-23-2015, 06:22 AM   #7
    Marypat0613
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    Re: Any ideas?

    I am curious what some of your symptoms are that led you to go to the Dr. or that led your drs to test you for the autoimmune diseases... I don't doubt that something is going on but just to get a better idea of what is going on myself. Any elevated levels are symptomatic of something but what is the question & your drs should be looking into that... If your dissatisfied then switch. I was a nurse about 20 years ago & I demand that my des listen to me. Period.

     
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    Old 09-23-2015, 06:32 AM   #8
    zipster
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    Re: Any ideas?

    Fatigue, off balance, foggy head and just general malaise at first, this is 14yrs ago. I had glandular fever when i was 18 (46 now) and since then i get random joint pain i.e in my shoulder joint and i am in agony for a few days and then it goes like it's never been there. I was tested for athritis at the time but it was negative. But over the years i have had anxiety symptoms, vertigo, stomach issues, sore throats, headaches, night sweats etc.

    Last edited by zipster; 09-23-2015 at 06:34 AM.

     
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    Old 09-23-2015, 07:40 AM   #9
    Marypat0613
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    Re: Any ideas?

    I would like to say 1st that ebv like chicken pox & others can reactivate on the body and cause fatigue & general malaise & fever just like it did at 1st onset. Sucky as it seems. Your shoulder pain seems like my RA onset which my rheumatologist referred to as palandromic RA..as the pain lasted a few days then came on suddenly then left just as suddenly. Mine came in joints of 3 about every 4-6 weeks til I got treatment. I'm sure some of your anxiety is coming from not being heard. I don't know if you have had a crp test done as I did not see that listed in your notes but would recommend that 1 as well. Also, do not know where you are from but would also recommend finding a board certified rheumatologist as they have to go thru more stringent training then others and keep up with their training and technical knowledge. Also, unfortunately some of your issues MAY be coming from perimenopause... I personally had to go they the whole thing at 30 (am now 44)..not fun. Just some things to consider.

     
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    Old 09-24-2015, 08:23 AM   #10
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    Re: Any ideas?

    Zipster, one additional way to aid diagnosis is through imaging (xrays/MRI) of your worst joints. If there are erosions in the joints, that points to RA and is a classic finding that would "cinch" the diagnosis. RA usually affects the larger joints in hands and fingers, those closest to wrist. Hand xrays are often helpful in figuring out what is going on. It is ok to ask for these things to clarify what is wrong.

     
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    Old 09-24-2015, 09:12 AM   #11
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    Re: Any ideas?

    Very good idea lady

     
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    Old 09-24-2015, 09:18 AM   #12
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    Re: Any ideas?

    I guess 1 reason that I didn't suggest this is that I myself have NO synovial damage from my RA in my hands or feet. It is in my hips, knees, shoulders, & elbows mainly with hips & knees needing total replacements 5 yrs out from diagnosis & start of treatment. The RA has also spread to my vascular system already & have lost a vein in 1leg & my lungs are severely affected. My biggest concern FOR ANYONE is DEMAND that your Dr listen...THEY WORK FOR YOU. YOU DONT WORK FOR THEM! Esp when you have multiple positive tests. Pos CCP. Pos ANA. Pos RA factor. Don't know bout the CRP...but still.....

     
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    Old 09-24-2015, 03:13 PM   #13
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    Re: Any ideas?

    zipster, have you seen the 2010 ACR/EULAR classification criteria for RA? I just re-read them & it strikes me that you need a "bean-counter". The criteria basically "award" points for things you've seemingly already experienced, even without having any more tests like radiological tests. Here are the categories. As I understand it, 6 points are needed to create a dx of RA. To me, the question is how many points your doctors THINK you have, and WHY.
    • varying # of points for whether large or small joints are affected, also for # of joints affected. (Large joints are defined as shoulders, elbows, hips, knees, and ankles; wrists are considered "small".)
    • points for serology: low-positive RF *or* ACPA, or a greater # of points for high-positive on *both* these tests
    • points for acute-phase reactants (CRP and ESR)
    • points for duration of symptoms

    I struggled for years until I found a rheumatologist who "bean-counted", meaning went thru the diagnostic process PROPERLY. He even had the courtesy to show me how the process worked & what he'd check-marked. (My dx was lupus, though, which has its own set of ACR/EULAR criteria.) Anyhow, I recommend reading these RA criteria, for insight into how the evaluation is supposed to be done.

    If you do manage to get X-rays done: one of the famous lupus authors describes the erosion seen in RA as looking like "mouse bites" on X-ray.

    Another thought: RF can also be positive in lupus (and other conditions, too). When you mention "glandular fever"***, that's actually on a list of so-called "alternative criteria" for lupus, 14 or so things that very often occur earlier in life in people who later develop lupus. This "alternative criteria" list was written by a world-famous British rheum, btw. Have your rheums tested for the various antibodies possible in lupus? (There are quite a few.)
    ***Correction. Sorry, it's "teenage growing pains", not "glandular fever" that's listed as an "alternative criteria " for lupus. Even so, to me it makes sense to have lupus & its other "close cousins" on the list of possibilities.

    I had signs of lupus starting young, then piling on over time. I had a ton of GI problems for 20+ years. Weirdly, I didn't get photosensitive rashes until my late 30's (but one can have lupus without ever having rashes). My Vit D tanked, so did B-12 and Folate. No issues with major organs. Episodic fatigue, hair loss, joint pain and pain along long bones, wild headaches, etc. My problem was that I was both "subacute" (no major organ problems) and was uncommon presentation (positive for anti-Ro, not for the better-known anti-ds-DNA or anti-Sm, plus a rash that was neither discoid nor malar). Also, very slow to evolve.

    Also, there are people who have so-called "crossover syndromes", meeting some criteria of multiple conditions. The RA/lupus crossover is called rhupus.

    If you haven't had thyroid function tested, that should be done, too. Looking forward to your updates. I hope you gain some traction soon!

    Last edited by VeeJ; 09-25-2015 at 04:14 AM. Reason: Correction

     
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    Old 09-25-2015, 04:28 AM   #14
    zipster
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    Re: Any ideas?

    When i was 18/19 (46 now) i had episodes of pain in different joints that would be really painful and last 2/3 days then go. E.g shoulder joint pain and i couldn't lift my arm without bad pain. I got tested for arthritis and it was negative. Over the years i had this randomly but it could be a few times a year so i just took ibruprofen and ignored it. And then obviously when i was 32 i started with all the other stuff, headaches, fatigue, off balance, foggy head etc. If the thoracic xray and lyme test that i have just had on wednesday don't show anything i am asking to see a rheumatologist again.

     
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    Old 09-25-2015, 06:57 AM   #15
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    Re: Any ideas?

    Interesting that you had joint pain so young. (Mine started at 13, and it took me years to realize how abnormal that really was.) I think one problem with trying to trap elevated ESR and CRP is that both are "acute phase reactants", thus might return to normal before your blood is drawn, especially if you have to wait for an appointment.

    I *think* the CCP antibody behaves differently, though, by turning positive and remaining positive---but I'm not 100% on this point---so I hope someone chips with more. Wishing you a breakthrough!

     
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