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Got my ANA back, and it was 1-40 titre --- which I was told was not really enough to suggest autoimmune (as a small % of the healthy populous can test positive for this, and a larger number would be more out of line, like 1/360).  However, I've also read that the number could indeed go higher if it is autoimmune.  I suppose the issue is I don't have any symptoms (yet) to go along with this.  No joint pain or fatigue per se.  I'm only 4 months into feeling this way, so who knows.  If anyone has better info, or has gone through this already, I'd love to hear.  I have a rheumy appoint on the 31st of July.  Maybe they can shed some light on it as well.  Very frustrating to feel this way and not have an answer (but suspect one anyhow).  

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Your doctor is right, it may mean nothing, but I am glad you are going to a Rheumatologist. Did you get a copy of your bloodwork? Did they check SED rate (it may say ESR) and CRP? If not, the Rheumatologist will likely do it. 

I also have an autoimmune disease, but not everyone does. Don't worry about what might be. Just wait for more information. 

Keep us posted.

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1 minute ago, KiminOrlando said:

Your doctor is right, it may mean nothing, but I am glad you are going to a Rheumatologist. Did you get a copy of your bloodwork? Did they check SED rate (it may say ESR) and CRP? If not, the Rheumatologist will likely do it. 

I also have an autoimmune disease, but not everyone does. Don't worry about what might be. Just wait for more information. 

Keep us posted.

I had my SED rate checked by another doctor.  I have my blood work through my patient site.  

Im trying not to worry but I just always go to the worst possible scenario, which isn’t helpful but I can’t help but think I have the fatal kind of Dysautonomia because I’m not developing the POTS or OH.  Or eventually will.  A wreck, basically.  

I started citalopram, which was my idea.  I figure it couldn’t hurt.

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@zerohours000: I hope the rheumy will be helpful. Not to hijack, but I just saw a rheumy at Cleveland Clinic yesterday (had high hopes) because I have a positive ANA and chronically elevated ESR and CRP as well as joint pain and just generally diffuse symptoms for the last 15 years. My PCP has thought for years that I had something rheumatological going on. 

This rheumy didn't place much weight on any of it. Said that "a lot of people have high inflammatory markers." Ok, well that's probably not a great thing, right? 🙄

Left with a diagnosis of fibromyalgia and no further suggestions. 

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I have generalized joint pains with swelling and abnormal knee arthroscopy ( showed inflammatory tissue ) as well as chronic fatigue ( believed to be caused by POTS ). I also run elevated temps at times for no reason. WBC is low, RBC is low. ANA and CRP are normal, ESR is high. Based on the ANA and CRP I am not auto-immune. I just want to let you know because even with symptoms and some abnormalities in labs there is no evidence of auto-immune disease. 

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5 minutes ago, dizzytizzy said:

@zerohours000: I hope the rheumy will be helpful. Not to hijack, but I just saw a rheumy at Cleveland Clinic yesterday (had high hopes) because I have a positive ANA and chronically elevated ESR and CRP as well as joint pain and just generally diffuse symptoms for the last 15 years. My PCP has thought for years that I had something rheumatological going on. 

This rheumy didn't place much weight on any of it. Said that "a lot of people have high inflammatory markers." Ok, well that's probably not a great thing, right? 🙄

Left with a diagnosis of fibromyalgia and no further suggestions. 

Thanks.  I see them in a month.  I figure cover my bases.  I don’t have any pain or swelling but who knows.  I think part of my anxiety is not knowing a) what’s going on and b) if it’s goih to worsen and show itself for what it is. 

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6 minutes ago, Pistol said:

I have generalized joint pains with swelling and abnormal knee arthroscopy ( showed inflammatory tissue ) as well as chronic fatigue ( believed to be caused by POTS ). I also run elevated temps at times for no reason. WBC is low, RBC is low. ANA and CRP are normal, ESR is high. Based on the ANA and CRP I am not auto-immune. I just want to let you know because even with symptoms and some abnormalities in labs there is no evidence of auto-immune disease. 

Sorry to hear that.  I don’t have pain per se but I’ve no clue if it wil gradually come on and whatnot.  Right now my eyes are burning a bit.  

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I have had joint pain for 15 years, random fevers, low body temp. Yet all my blood work comes back normal. In my yearly blood test I have them check my RH factor and sed rate just because my mom has RA (and her mom had it). I expect it is going to show up eventually just based on symptoms and I know that if I get a handle on it early it will not be so bad. I figure good numbers means I am good for now. If I am lucky it will never show. 

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3 minutes ago, StayAtHomeMom said:

I have had joint pain for 15 years, random fevers, low body temp. Yet all my blood work comes back normal. In my yearly blood test I have them check my RH factor and sed rate just because my mom has RA (and her mom had it). I expect it is going to show up eventually just based on symptoms and I know that if I get a handle on it early it will not be so bad. I figure good numbers means I am good for now. If I am lucky it will never show. 

Recently my hands get very cold.  Not sure if that’s a marker of anything but they go cold pretty easily these days.  I guess there’s so much I just don’t know.  

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46 minutes ago, dizzytizzy said:

I have a positive ANA and chronically elevated ESR and CRP as well as joint pain and just generally diffuse symptoms for the last 15 years. My PCP has thought for years that I had something rheumatological going on. 

This rheumy didn't place much weight on any of it. Said that "a lot of people have high inflammatory markers." Ok, well that's probably not a great thing, right? 🙄

I don't know if I agree with your Rheumatologist. What made him say nothing was going on? You have a positive ANA, elevated inflammatory markers and physical symptoms. Did your ANA have a smear pattern? It would be on your bloodwork. Did he run tests for Rheumatoid-arthritis and Lupus, etc, and because they were negative, dismiss you? 

What was your ANA ratio? 

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13 minutes ago, zerohours000 said:

Recently my hands get very cold.  Not sure if that’s a marker of anything but they go cold pretty easily these days.  I guess there’s so much I just don’t know.  

If you have low blood volume that would be pretty normal. Even if not, some people just get colder hands or warmer hands. My husband's are like fire. Feels good when my feet hurt :)

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11 minutes ago, KiminOrlando said:

I don't know if I agree with your Rheumatologist. What made him say nothing was going on? You have a positive ANA, elevated inflammatory markers and physical symptoms. Did your ANA have a smear pattern? It would be on your bloodwork. Did he run tests for Rheumatoid-arthritis and Lupus, etc, and because they were negative, dismiss you? 

What was your ANA ratio? 

You seem very knowledgeable in this area.  What should I 100% ask for at my appointment?  

Thanks in advance 

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@KiminOrlando: Titer was 1:40, no pattern. I'll PM you more details, so as not to hijack the thread. 

But in short, I heard the resident (who performed the history/physical and exam) tell the rheum that "doctors have convinced her that there is something wrong with her." So the 8-hour roundtrip to Cleveland was a waste this go-around. 

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2 minutes ago, dizzytizzy said:

@KiminOrlando: Titer was 1:40, no pattern. I'll PM you more details, so as not to hijack the thread. 

But in short, I heard the resident (who performed the history/physical and exam) tell the rheum that "doctors have convinced her that there is something wrong with her." So the 8-hour roundtrip to Cleveland was a waste this go-around. 

Would you still recommend an autonomic clinic?  When did you decided to go to such a clinic?  Like, was there a threshold where your normal PCP just couldn’t handle or do much more for you?

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My ANA is 1:160 positive (I think speckled, or was if homozygous? Whichever one indicates lupus) and was never positive until this year... ESR/CRP are okay, rheumatoid factor normal, DNA test for lupus and mito normal, and so I'm told by my PCP and hematologist that it's not a big deal and I don't need follow up. I do have a lot of soreness, low temp, recurrent infections... I may push to see a rheumatologist but I doubt it'll get me anywhere. 

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1 minute ago, RecipeForDisaster said:

My ANA is 1:160 positive (I think speckled, or was if homozygous? Whichever one indicates lupus) and was never positive until this year... ESR/CRP are okay, rheumatoid factor normal, DNA test for lupus and mito normal, and so I'm told by my PCP and hematologist that it's not a big deal and I don't need follow up. I do have a lot of soreness, low temp, recurrent infections... I may push to see a rheumatologist but I doubt it'll get me anywhere. 

Just curious, how many times over the years have you been tested?

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@zerohours000 I am scheduled to be seen in the autonomic clinic at Cleveland in November. Local EP has diagnosed auto dys, but doesn't have the capability to perform any of the testing like Cleveland does. I know there's some arguments that the extensive testing isn't helpful/worth it, but for me personally, it will help peace of mind...I think 😁 I'm someone who needs to know the whys behind things and want to do what's within my reach to find that out. 

I've been unwell since 2004 and largely gave up doing any further testing around 2008 or so. Switched to this PCP in 2014 and she's really went above and beyond trying to help me, but we've run our course as many of the labs - like antibodies - have come back normal. Mainly have the chronically elevated inflammatory markers and now elevated prolactin, DHEA, and cortisol. She's disappointed by the rheum visit and thinks a visit with an endo may be worth it. We'll see. Pretty burnt out with MDs at the moment. 

To better answer your question: As more symptoms have piled up and nothing definitive has shown in labs/radiology, the PCP has run out of ideas. 

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51 minutes ago, RecipeForDisaster said:

I'd say about 10 times, maybe every 8 months on average, starting when I was a teen? We always thought it would come up positive and never did. The last 3 times it has been. 

Interesting. I have seen similar happen. My mom came up negative then 2 years later positive then another year negative again. Why do doctors do the test if it isn't reliable?

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41 minutes ago, dizzytizzy said:

@zerohours000 I am scheduled to be seen in the autonomic clinic at Cleveland in November. Local EP has diagnosed auto dys, but doesn't have the capability to perform any of the testing like Cleveland does. I know there's some arguments that the extensive testing isn't helpful/worth it, but for me personally, it will help peace of mind...I think 😁 I'm someone who needs to know the whys behind things and want to do what's within my reach to find that out. 

I've been unwell since 2004 and largely gave up doing any further testing around 2008 or so. Switched to this PCP in 2014 and she's really went above and beyond trying to help me, but we've run our course as many of the labs - like antibodies - have come back normal. Mainly have the chronically elevated inflammatory markers and now elevated prolactin, DHEA, and cortisol. She's disappointed by the rheum visit and thinks a visit with an endo may be worth it. We'll see. Pretty burnt out with MDs at the moment. 

To better answer your question: As more symptoms have piled up and nothing definitive has shown in labs/radiology, the PCP has run out of ideas. 

I agree I need to know the whys too!! I am going to go to my PCP next week and see if she knows a good doc to see to rule out autoimmune and hEDS for sure as an underlying. 

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1 hour ago, dizzytizzy said:

@zerohours000 I am scheduled to be seen in the autonomic clinic at Cleveland in November. Local EP has diagnosed auto dys, but doesn't have the capability to perform any of the testing like Cleveland does. I know there's some arguments that the extensive testing isn't helpful/worth it, but for me personally, it will help peace of mind...I think 😁 I'm someone who needs to know the whys behind things and want to do what's within my reach to find that out. 

I've been unwell since 2004 and largely gave up doing any further testing around 2008 or so. Switched to this PCP in 2014 and she's really went above and beyond trying to help me, but we've run our course as many of the labs - like antibodies - have come back normal. Mainly have the chronically elevated inflammatory markers and now elevated prolactin, DHEA, and cortisol. She's disappointed by the rheum visit and thinks a visit with an endo may be worth it. We'll see. Pretty burnt out with MDs at the moment. 

To better answer your question: As more symptoms have piled up and nothing definitive has shown in labs/radiology, the PCP has run out of ideas. 

That makes sense.  My PCP was flummoxed the very first day.  And on our now 3rd visit, he just sort of scratches his head and shrugs.  Not a good sign.  But if the usual route bears no fruit I may look into Rochester or Vanderbilt.  Once they exhaust "broad based" digging they're sort of out of their element.  I'm sure that's why specialists exist but it looks like even they don't have the precise tools of this sort of thing either.  I'm not sure if I'm piling up symptoms --- as some have come and gone in the last 4 months --- but there are definitely ones that have become steadier and more consistent (like the sleep, for instance, is guaranteed to be awful).  I guess all I can do is wait.  

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Sorry, haven't been following the thread, my daughter's been really sick, but wanted to throw this in the mix.  Her ANA over the past several years has been mostly positive with a 1:40 titer, speckled pattern.  Rheumatologists would just laugh in her face, literally, even though there is strong family history and she was symptomatic.  Jump to last year and her titer increased to 1:80.  Hmm, still no go with a rhematologist that we decided to give a second chance.  That was a mistake.  Fast forward to a couple of weeks ago when a very zealous movement disorders neurologist determined she was going to get us some help and ran some out of the box labs.  Her ANA is now 1:160 (doubled since the previous one), pattern is homogenous (I keep forgetting to look that one up) and her Anti TPO Antibody test came back high (autoimmune thyroid test).  It's supposed to be less than 6 and my daughter's was 32.1.  So, the moral of this story is, just because your ANA is low now, it might develop into something later.  My daughter's condition is screaming autoimmune thyroid.  Most likely Hashimoto's or something I ran onto today, Autoimmune Hypoparathyroidism.  If you have any symptoms of thyroid, don't just go by the normal TSH, T3, or  T4 panels.  Make them run the Anti TPO Antibody test.  The doctor had commented that no one ever tests for this one and she didn't know why.  So thankful she did!  Read something by Dr. Graham Hughes (foremost authority on Lupus) and he was asked if someone had a low titer, but was symptomatic in addition to having a strong family history, would he treat them or wait and see what would happen.  He said he would treat.  Always treat in those situations.  So, don't let the medical profession act like there's nothing there.  There just might be and the sooner you get treated, the less damage it will do to your organs. 

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Interesting... I've been toying with a second opinion from an endocrinologist but I might also ask my hematologist to run that test.

 

I'm certain my ANA wouldn't just start being positive every time for no reason at all. As you said, if it's not a big deal, why test? I know some people "just have a positive ANA" but when you used to be consistently negative....

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3 hours ago, DizzyGirls said:

Sorry, haven't been following the thread, my daughter's been really sick, but wanted to throw this in the mix.  Her ANA over the past several years has been mostly positive with a 1:40 titer, speckled pattern.  Rheumatologists would just laugh in her face, literally, even though there is strong family history and she was symptomatic.  Jump to last year and her titer increased to 1:80.  Hmm, still no go with a rhematologist that we decided to give a second chance.  That was a mistake.  Fast forward to a couple of weeks ago when a very zealous movement disorders neurologist determined she was going to get us some help and ran some out of the box labs.  Her ANA is now 1:160 (doubled since the previous one), pattern is homogenous (I keep forgetting to look that one up) and her Anti TPO Antibody test came back high (autoimmune thyroid test).  It's supposed to be less than 6 and my daughter's was 32.1.  So, the moral of this story is, just because your ANA is low now, it might develop into something later.  My daughter's condition is screaming autoimmune thyroid.  Most likely Hashimoto's or something I ran onto today, Autoimmune Hypoparathyroidism.  If you have any symptoms of thyroid, don't just go by the normal TSH, T3, or  T4 panels.  Make them run the Anti TPO Antibody test.  The doctor had commented that no one ever tests for this one and she didn't know why.  So thankful she did!  Read something by Dr. Graham Hughes (foremost authority on Lupus) and he was asked if someone had a low titer, but was symptomatic in addition to having a strong family history, would he treat them or wait and see what would happen.  He said he would treat.  Always treat in those situations.  So, don't let the medical profession act like there's nothing there.  There just might be and the sooner you get treated, the less damage it will do to your organs. 

Thanks for the helpful advice.  I see my rheumatologist on the 31st.  I’ll ask for that.  Very helpful.  Hope your daughter gets the help she needs 

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I was tested for 30 years for ANA before one came up positive.  Fortunately my PCP recommended a great rheumatologist who squeezed my joints in particular ways that I realized they hurt.  It wasn’t until I had been on Plaquenil for several months I realized that I had had so much joint pain and that my aching feet and need for better shoes was a symptom.  I didn’t know this because it all came on gradually.  I must have seen 5-10 rheumatologists over the years.  Don’t keep searching!  Plaquenil has helped, fight for treatment.

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