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Old 02-25-2013, 03:56 PM   #1
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Undiagnosed Chronic Pain And Other Problems

(Accidentally posted this first in the wrong section. Here goes a second try)

I joined this forum out of sheer desperation. I saw yet another Rhumatologist today, and after no answers from her I have no idea what else to do or where else to turn. I have been experiencing chronic, debilitating pain for 2 1/2 years. I am a 20 year old female with a family history of auto-immune problems including lupus (my paternal grandfather) and anti-cardiolipin (my maternal aunt). I have given pints and pints of blood, with a few abnormalities including high ANA (1/640 most recently), high MCH, high monocytes and absolute monocytes, and low C4 complement. My urine tests have all come back normal, except for one very recently with high bacteria and protein.

I went back for another opinion this morning because I feel like I am getting worse. My pain has had me bedridden more and more lately, I am on my third UTI in six months, and my hair has thinned significantly. I have no idea what else to do, has anyone else ever been in this situation or have similar symptoms to me? How did you handle it?

 
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Old 03-05-2013, 05:15 AM   #2
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Re: Undiagnosed Chronic Pain And Other Problems

Hi & welcome. Do you have copies of your labs? I'd be especially interested in the set showing ANA of 1:640.

Problem is, ANA is general, not specific to any one condition. It can elevate in a variety of autoimmunes; or due to non-autoimmune problems (bacterial or viral infections); or even where there's no illness (age, which wouldn't apply to you, or family tendency). But I think 1:640 should be considered significant, especially given your context of 2.5 years of unexplained fatigue & pain, hair loss, recurrent UTI's, etc.

When ANA is considered significant, tests are usually run that look for antibodies seen in connective tissue disorders---like lupus (SLE), Rheumatoid Arthritis (RA), Sjogren's, Mixed Connective Tissue Disease (MCTD), etc. Such specific tests would appear on your labs with names like anti-ds-DNA, anti-Sm, anti-Ro, anti-La, RF, anti-RNP, etc. (There are a bunch.) If such detailed tests haven't been run, I'd want them done ASAP.

I believe hypothyroidism can cause similar symptoms (pain, fatigue, hair loss), therefore I'd also want thyroid levels checked. BTW, there's a thyroid-specific autoimmune called Hashimoto's Thyroiditis, which can occur alone or co-exist with other AI's. Also, I think Hashimoto's ALONE can elevate ANA.

I think C4, which is a "serum complement", can depress in lupus and in some other conditions, too. You could ask your doctor to tell you the conditions in which depressed C4 occurs.

Yes, I had a rough time getting answers---many of us did---so we can understand your frustration. I eventually realized I was stuck in limbo, so I ramped up to better doctors at a teaching hospital. There I got answers & help in one month (it turned out to be lupus, milder side, only Plaquenil needed). Anyway, I hope this helps some and that others add their thoughts. Post more when you can, OK? Bye for now, sincerely, Vee

p.s. HANG IN THERE!

Last edited by VeeJ; 03-05-2013 at 05:17 AM. Reason: typo

 
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Old 03-05-2013, 09:24 AM   #3
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Re: Undiagnosed Chronic Pain And Other Problems

I have had two or three of the "anti" tests, and they all came back negative. I know that I was tested for anti-ds-DNA and anti-SM, specifically. As for the hypothyroidism, I have those tests in the works right now! Hopefully they will give me some sort of answer or clue, even if hypothyroidism isn't the problem.

A teaching hospital may be a good thing. I live only about an hour away from Standford, so I think I will talk to my doctor about seeing somebody up there soon. Thank you very much for your help!

 
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Old 03-05-2013, 09:34 AM   #4
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Re: Undiagnosed Chronic Pain And Other Problems

Sometimes the staining pattern of the ANA test can point in a particular direction, sometimes not. Do you know what yours was?

 
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Old 03-05-2013, 09:36 AM   #5
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Re: Undiagnosed Chronic Pain And Other Problems

It was speckled, does that have any significance?

 
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Old 03-05-2013, 10:01 AM   #6
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Re: Undiagnosed Chronic Pain And Other Problems

Unfortunately, this pattern is seen in lots of things and no things as well. Another key test is your SED rate or CRP. These tests indicate if there are any inflammatory processes going on. However, both ANA and inflammation can be elevated in the presence of an infection such as an UTI. Were I in your shoes, I would get the tests that VeeJ suggests, once I was clear of the UTI. And like she says, many of us had a hard time getting answers. At least I got lucky when I was finally referred to a rheumatologist and was diagnosed right away, first with Undifferentiated Connective Tissue Disease and from there, eventually, LOL, the disease formerly known as CREST. I too hope this helps, and let us know how you're doing. Best wishes!

 
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Old 03-05-2013, 01:09 PM   #7
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Re: Undiagnosed Chronic Pain And Other Problems

Given the long time you have felt ill, your lab results and symptoms, it is surprising none of your rheums have done more thorough testing. Glad the thyroid is underway. Monocytes are high in lupus, as well as some other inflammatory conditions in the autoimmune category. You have 3 blood findings supportive of an AI disease-low Complement, high ANA, high monocytes. Do you have CBC results? Those are helpful too and can provide clues. I would seriously consider seeing someone at the university to get some answers. Some Drs will treat you with a presumptive diagnosis to see how you respond, and then at least you can feel better. But it is important to get the full battery of tests done before treatment, as some of the meds can suppress test results and confuse the picture.

 
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Old 03-06-2013, 11:31 AM   #8
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Re: Undiagnosed Chronic Pain And Other Problems

I just got my blood results back and my thyroid hormones thyroxine and thyrotropin came back normal. However, I have a borderline vitamin D deficiency. According to this lab, normal is 30 and my levels are at 27. I'm going back to the doctor on Thursday and am going to request a trip up to Stanford to see what's really up.

Does anyone know anything about a possible correlation between a vitamin D deficiency and my symptoms? I want to know what to bring up with the doctor so I sounds more intelligent than insane lol.

 
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Old 03-06-2013, 12:01 PM   #9
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Re: Undiagnosed Chronic Pain And Other Problems

I just got my blood results back and my thyroid hormones thyroxine and thyrotropin came back normal. However, I have a borderline vitamin D deficiency. According to this lab, normal is 30 and my levels are at 27. I'm going back to the doctor on Thursday and am going to request a trip up to Stanford to see what's really up.

Does anyone know anything about a possible correlation between a vitamin D deficiency and my symptoms? I want to know what to bring up with the doctor so I sounds more intelligent than insane lol.

 
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