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Discussion Starter · #1 ·
Hi, Well I went to the lab and got copies of my bloodwork. The doctor ordered an AMA but lab accidentally did an ANA. The past four days I have been thinking my AMA was that high and that I had primary biliary cirrhosis. This is crazy. It makes much more sense though. I have been tested numerous times for lupus and many doctors have suspected I could have it but ESR and ANA always came back fine. I have dealt with debilitating pain at times and constant skin rashes since my early 20's. Constant fatigue and no energy (my husband always thinks I am depressed because I am so trired). I had a really complicated pregnancy which when I read about lupus and pregnancy describes mine to a tee (preeclampsia, placental infarctions, bedrest, growth restriction of baby, premature delivery). I know that just an ANA cannot diagnose anything but what do you make of an ANA that high. Am I on the road to finally get a diagnosis? As much as I don't want to have anything wrong with me, I am sick of feeling this way and not knowing why.
 

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Hello again :)

Yes that makes much more sense!!

An ANA that high is highly suggestive of lupus if combined with enough of the other classification criteria.

I'd say you're well on the road to finally getting a diagnosis. You are seeing a rheumy soon aren't you?

Katharine
 

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Discussion Starter · #3 ·
Katharine, Yes, I actually called another rheumy in the area and was able to get an appointment August 4th which is much better than August 25th (the rheumy my pcp referred me to). I am on both doctors cancellation list so I am thinking about for the time being keeping both appointments for the next week or so in case there is a cancellation. I am leaning toward wanting to go to the Aug 4th one though because I read she has a special interest in lupus. Now the only other bloodwork that has been done so far was CBC and CMP. the only thing off there was my LFT's elevated. Could a lupus flare cause LFT's to be elevated. My AST was only slightly elevated and ALT was 2x normal?
 

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I too would lean towards the lupus specialised rheumy and would tend to wait for a "full" appointment as (and I believe someone else mentioned this) a "first" appointment would generally be longer than a follow up one and you need that extra time in order to have a good appointment :)

Katharine
 

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Hi Liza Lou

How very bizarre that you should have discovered such a vital clue to a diagnosis by mistake!?!?!?!

Oh well - better this way than not at all.

Best of luck for your appointment in August.

Merle
 

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An ANA of that titre makes it much more likely that autoimmune disease is the reason for the positive ANA. I've had that same titre myself although speckled pattern. ;)

I would lean towards the person that has a special interest in lupus too, although it isn't certain of course that is what you have because Sjorgen's syndrome is also a distinct possibility if I'm remembering right. Sjorgen's patients will also commonly have very high ANA titres. Some will say they tend to have the highest titres.

I think you are definitely on your way to a diagnosis and more importantly some helpful treatment.
 

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Discussion Starter · #7 ·
Merle- Thanks, it is sort of crazy that I would get a positive ANA this way...when it wasn't even ordered. Everything happens for a reason I believe.

Maia- I am sort of curious about the sjogren's. At the end of my pregnancy and during the first 6-8 months after I had severe, severe dry mouth. I have recently been having nose sores (is that specific to lupus?). During my 20's it seemed my symptoms were more in line with lupus...the rashes, the extreme joint pain. It is all confusing. The symptoms seem to overlap. Are there easy blood tests that will point them in the right direction of sjogren's or lupus?
 

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Hi, the rheumy will normally run a full panel of blood tests for all antibodies, lupus ones and sjorgens and the rheumatoid factor. I hope you get on well at your appt. It sounds as though you are close to getting answers.

Deb
 

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You can have lupus AND Sjorgen's too... in such a case lupus is typically listed as the "primary" disorder with Sjorgen's being secondary. Sjorgen's patients are usually diagnosed by the symptoms of dry mouth/eyes which is more specific to Sjorgen's in conjunction with the other symptoms of joint pain and fatigue, etc. Usually with a confirmatory lip biopsy as well as positive blood tests (most typically a high ANA as well as SSA and/or SSB being positive).

Either way, treatment is much the same but there are some unique things to "look out for" with each illness.
 

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hi there

just to give you my personal experience, i was diagnosed with primary sjogrens syndrome and had an ana exactly like yours and a positive RF also. As forementioned apparantly sjogrens syndrome (the more systemic primary kind) often has a very high ana reading. I also had dry eyes and severe mouth issues but all other symptoms were exactly like lupus. ie skin issues, hives, reynauds, very bad joint paid, nose and mouth ulcers, swollen glands, eye pain, headaches, very bad body pain, nerve issues etc etc. The symptoms are pretty much the same and often there is overlap and im sure some people are given a lupus diagnosis with exactly the same results and symptoms as I. My sjogrens diagnoses was primarily due to positive SSa and the high ana i think?

hope you get some answers soon

annie x
 

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Discussion Starter · #11 ·
Thanks Annie. Starting about a year and a half ago (at the very end of my pregnancy) I began having severe, severe dry mouth. It continued until about 6 months post-partum and I still deal with a dry mouth but not near the severity I was. That sort of makes me wonder about sjogren's. I also have elevated liver function tests which concerns me about that because I have read that primary biliary cirrhosis can occur with sjogrens. I also have a lump in my upper abdomen...waiting on getting a ct scan done (hopefully this week). I am just so stressed about all of this. I just wish I could fast forward through the next few weeks and just know what is going on. Do you have any organ involvement with your sjogren's syndrome?
 

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hi lizalou

i do know exactly what you are going through. I have been told dont have any organ involvement with my sjogrens although i do leak a small amount of protein in my urine, my urinalysys and kidney function is normal though. I believe a small amount of inflammation may have occured around about the time i developed sjogrens although havent officially been diagnosed with this because nothing has showed up in my bloods??? My symptoms are very dry mouth (thrush and ulcers and very little saliva) very bad joint and and migrating body pain. I also have hypergammaglobulinima which is a type of vascullitis and swollen glands sometimes. Also very bad reynauds and alot of nerve pain. I also have osteoporosis and back problems.

In regard to the liver tests being elevated, what were your results?? This was a worry of mine too and i also read this can be an issue in sjogrens but i did speak to a top expert (elizabeth price in swindon) with regard to this and she alleviated alot of my fears.

Do let us know how you get on and free free to pm me

let us know how you get on

take care annie x
 
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