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Crohn's Disease Forum » General IBD Discussion » Mildly positive ANA


08-26-2011, 12:15 PM   #1
Rebecca85
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Mildly positive ANA

I am still having problems with tiredness, muscle fatigue, pins and needles, yada yada yada. So I went back to the doctors. To cut a long story short, my blood test came back mildly positive for ANA (autoimmune markers). I asked the doctor how it would be affected by the Crohn's and azathioprine and he didn't know. Anybody have any idea? (for the record I have been in remission for a while, CRP and ESR normal)
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08-26-2011, 01:06 PM   #2
Carrie630
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you need more information about your ANA test. Did your results include a pattern?
08-26-2011, 02:02 PM   #3
Rebecca85
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I guess they'd have to contact the lab again.
08-26-2011, 02:09 PM   #4
Carrie630
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normally, if the lab sends back a positive result, they'll send back more info. Did you get the results yourself or were they told to you by the doctor/nurse? When an ANA panel comes back positive it means that the titers were high (you can have a non-0 ANA and still be considered negative. they don't tell you the pattern if its below 1:320) when you have a positive result they look at it on a slide, different patterns are known to be associated with different auto-immune disorders like lupus, sjogren, ra, raynaud's, etc.

A pattern could be diffuse (homogenous), speckled, or something else. There are a variety of patterns but diffuse and speckled are the ones I've heard about most often.
08-26-2011, 02:32 PM   #5
Rebecca85
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I was given the results by a GP, but not one of the ones who usually treat me (as none of them were available when I phoned). I did ask if there were any numbers but he said not, they just receive 'positive' or 'negative'. The lab did say not to worry as some normal healthy people do get a small positive, so I pointed out I'm not a normal healthy person, so the doctor is going to try to find out more. But to make it even more annoying, it's Friday evening here and it's a bank holiday weekend so I can't speak to anyone until Tuesday. Which means 3 days of worry!
08-26-2011, 02:34 PM   #6
Misty-Eyed
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Oo mine was positive, atypically speckled. Whatever that means. Didn't even know I'd had the test done. I just read it on a copy of a referral letter from my GI to the surgeon. I have no idea when it would even of been done!
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Panproctocolectomy and terminal end ileostomy October 2011.
08-26-2011, 11:26 PM   #7
outlier
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I know that i have come up positive for ANA when i have a flare, my Rhemy explained to me that when our autoimmune system goes crazy your more likely to come up with markers for things you don't really have as well as a higher number of false positives. or that was my understanding. and does make some sense.

I did/do secretly have a fear that I be dx with Lupus one of these days but I have not come up positive for ANA in a while and I have been reassured several times no.

Good luck but don't let it worry you too much, despite you being in remission things might just be hanging around
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08-27-2011, 02:15 AM   #8
Rebecca85
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To be honest I wouldn't mind getting another dx if it meant they could do something about it! Or at the very least stop telling me it's in my head, I'm depressed, have some more antidepressants. I mean, the fluoxetine did work wonders (though I have now upped the dose to 40mg and still have some problems), but I can't help feeling I'm depressed because of my health problems not the other way round.
09-04-2011, 08:35 PM   #9
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I have had a positive ANA, speckled pattern. I was told this was because of the inflammation this tests were sensitive enough to pick it up. I do not have Lupus or the classic symptoms. It seems that its basically non-specific. I also have High CRP, High RF, HIGH ESR. I think its another way of seeing inflammation outside of the bowel, maybe? I have Vit deficiencies as well and other stuff. But everyone with this disease seems to have different things going on. Wish you the best.

All the best,
Ceci
09-04-2011, 08:37 PM   #10
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Oo mine was positive, atypically speckled. !
ME TOO!!!!!!!!!!!! Crazy, lol

Best,

Ceci
09-04-2011, 10:36 PM   #11
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Hi Rebecca,

Are you on Vitamin B12 injections? Because your symptoms sure sound like peripheral neuropathy.

*hugs*
09-05-2011, 04:34 PM   #12
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My B12 has been tested and I am not deficient. But my GP also thinks it is peripheral neuropathy, so I have an appointment with a neurologist Oct 14th.
09-05-2011, 06:29 PM   #13
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I'd put money that you're deficient. They tested your serum B12 right?

The problem is, many people experience deficiency symptoms at rates higher than "normal" but doctors do serum B12 levels which come back "normal" and therefore think nothing of it.

That's why I suggest Homocysteine and Methylmalonic acid levels be tested as serum B12 tests may not be sensitive enough. In this study it was shown that increased Serum Homocysteine and Methylmalonic acid levels are great markers for deficiency. If your body is deficient, no matter your serum B12 level, Serum Homocysteine and Methylmalonic acid levels will increase.

Heck, in Japan, they raised their minimum from 200 pg/ml to to 550 pg/ml because so many people were showing deficiency at the higher levels.

Demand that they check your Homocysteine and Methylmalonic acid levels.
09-06-2011, 01:13 AM   #14
Rebecca85
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Thanks, David. At the moment, I'm furious that after visiting every doctor in my GP practice, and mentioning it to docs in hospital, the muscle weakness/fatigue has been dismissed as Crohn's symptoms, and the pins and needles as just something odd. After the messing about with the ANA I got in to see the senior doctor at the practice who goes straightaway 'yeah, pins and needles? that's peripheral neuropathy, let's get you in to see the neuro'. If the diagnosis was that simple, why wasn't it picked up 18 months ago? And he STILL insists the muscle weakness is Crohn's. I think the problem is, I appear perfectly normal when they do their little tests. But I've been sat in a waiting room all morning, I'm rested. If I'd been walking the dog or something, it would be a different story. And, before I got ill, I was a rock climber and learning trampoline! Up to 2 years ago, I could do maybe 5 chin ups in a row. A couple of days ago, I was playing with my niece, hung from the monkey bars, and seriously thought my shoulders were going to dislocate it was that painful!

Anyway this is turning into a rant and it wasn't meant to be! Thanks for the info. Just one thing, I did try taking b12 supplements in case the doctors were wrong. I tried 1000mcg sublingual tablets, and I also tried taking 2000mcg doses orally, each for about a month. Neither had any improvement in my symptoms. If I were deficient, would I have noticed an improvement from this, or was the dose not high enough/sustained for long enough do you think?
09-06-2011, 07:52 AM   #15
Carrie630
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Rebecca, I hate when doctors just blow stuff off!! My muscle fatigue/weakness and pins/needles is blown off as part of my fibromyalgia and/or because "I don't exercise enough". Except, its not about the exercise, I'm sure you understand. When its bad it has nothing to do with how much or how little I've been walking, and it can hit at any time. I have to say I think something else is going on that they're just not looking for, but heck if I know what. My vitamin d used to be dangerously low, but I've been supplementing for like 3 months now, and it hasn't done a thing.


good luck!
09-06-2011, 09:44 AM   #16
David
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Hiya Rebecca,
Thanks, David. At the moment, I'm furious that after visiting every doctor in my GP practice, and mentioning it to docs in hospital, the muscle weakness/fatigue has been dismissed as Crohn's symptoms, and the pins and needles as just something odd. After the messing about with the ANA I got in to see the senior doctor at the practice who goes straightaway 'yeah, pins and needles? that's peripheral neuropathy, let's get you in to see the neuro'. If the diagnosis was that simple, why wasn't it picked up 18 months ago?


Grrr, that must be so frustrating. I'm admittedly not too educated on how the UK medical system works. Are GP's general practitioners? Would they be trained in the finer points of Crohn's Disease? The only reason I knew about peripheral neuropathy was because I've been reading everything I can get my hands on related to IBD and what you were describing seemed pretty case book.

Regarding the B12, while that certainly increases the chances that I am incorrect about you being deficient, it wouldn't completely rule it out either. I say that because the studies I've read state that when the normal absorption mechanism for B12 isn't functioning properly, mega oral doses like you're taking are absorbed at about 1%. So there would be many factors coming into play, some of which I understand, others that I as of yet do not. One of the bigger factors would be just how low you got and were then coming up from.

With that said, from what I understand (please keep in mind I'm still very much educating myself about this) once you get to the peripheral neuropathy stage, that damage has been done and getting your B12 levels back up doesn't reverse the symptoms you're experiencing immediately, it just stops more damage from being done. So you may have been deficient and damage was done, then your supplementation is stopping more from happening. This is part of the reason it's so pivotal for Crohnies to get on B12 BEFORE the symptoms start and to monitor closely.

If it was me, I'd request the homocysteine and methylmalonic acid tests. But, well, I'm no doctor

Good luck Hon.

*hugs*
09-06-2011, 11:12 AM   #17
Carrie630
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David, what do you know about peripheral neuropathy? is it diagnosable through any particular tests?
09-06-2011, 11:15 AM   #18
Rebecca85
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Yes, I will get on to them! GP is indeed General Practitioner, they are your usual doctor who are normally your first port of call for any illness (except in real emergencies). They prescribe medicines (including taking charge of repeats of my IBD meds), order blood tests, refer you to specialists etc as they see fit. They are not trained in any particular area of medicine. Then I also have a GI doctor at the hospital- I see him every 3-6 months for a checkup. And an IBD nurse who is my first port of call for IBD related stuff. I have told ALL my medical professionals about my symptoms at some point or other.

PS I had also read about peripheral neuropathy, but didn't particularly think I had it because according to what I've read, I also probably have diabetes, systemic lupus, and chronic fatigue syndrome!
09-06-2011, 11:58 AM   #19
David
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David, what do you know about peripheral neuropathy? is it diagnosable through any particular tests?
I don't know much, unfortunately Just the symptoms and that there are a lot of potential causes, B12 deficiency being one of them. If I was a doctor and had a patient with Crohn's Disease, the second they uttered the word, "pins and needles" or "muscle weakness" my eyes would get wide and I'd suspect peripheral neuropathy.

From what I understand there are various tests of the nerves and they can even do a nerve biopsy and check it out under a microscope, but I haven't learned about that yet.
Yes, I will get on to them! GP is indeed General Practitioner, they are your usual doctor who are normally your first port of call for any illness (except in real emergencies). They prescribe medicines (including taking charge of repeats of my IBD meds), order blood tests, refer you to specialists etc as they see fit. They are not trained in any particular area of medicine. Then I also have a GI doctor at the hospital- I see him every 3-6 months for a checkup. And an IBD nurse who is my first port of call for IBD related stuff. I have told ALL my medical professionals about my symptoms at some point or other.

PS I had also read about peripheral neuropathy, but didn't particularly think I had it because according to what I've read, I also probably have diabetes, systemic lupus, and chronic fatigue syndrome!
I can kinda give the GP's a pass as it's impossible to know everything about all diseases. The peripheral neuropathy they probably see is the much more severe cases where they can cut you with a knife and you don't feel it. They might not make the Crohn's Disease > Vitamin B12 > tingling connection. A GI on the other hand? Well... I can't give them a pass.

Peripheral neuropathy can be caused by what you listed, not the other way around. Just because you have PN doesn't mean you have the others. But if you were diagnosed with one of the others (or Crohn's ), then your docs should know to keep an eye out for PN.
09-06-2011, 12:05 PM   #20
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The reason why I asked about the tests is because I had a test on the nerves in my hands/arms for carpal tunnel, but nothing showed up. I think it was called an EMG, but I'm getting confused with all the medical acronyms!
09-06-2011, 12:16 PM   #21
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The reason why I asked about the tests is because I had a test on the nerves in my hands/arms for carpal tunnel, but nothing showed up. I think it was called an EMG, but I'm getting confused with all the medical acronyms!
Yep, though I don't know if they use those on PN but my guess is yes. I had an EMG on my shoulder area when I was 19. I, to this day, put it down as (by far) the most painful test I've ever experienced And the doctor who did it chuckled the whole time. It was traumatizing
09-06-2011, 12:25 PM   #22
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the doctor who did mine was pretty nice. It hurt like hell!
09-06-2011, 12:39 PM   #23
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David- I didn't mean that I actually had any of those other things. But I do have a tendency to read about things and convince myself I have them. Like I go to the toilet (wee) a lot, and get shaky if I don't eat, and sometimes get really thirsty, which are all symptoms of diabetes. But I was tested (several times, urine and blood) and I don't. Then when I got the ANA result I learned about lupus, and I read about the symptoms and thought 'yep that's me' but it's highly unlikely I do have it. So I thought PN was just me reading about things and convincing myself I had it again!
09-06-2011, 12:41 PM   #24
Rebecca85
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I'm probably going to have that painful test done aren't I?
09-06-2011, 12:47 PM   #25
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David- I didn't mean that I actually had any of those other things. But I do have a tendency to read about things and convince myself I have them.
Heheh, most people have that tendency, myself included
I'm probably going to have that painful test done aren't I?
Sorry about that. As soon as I submitted that I thought to myself, "That was probably a bad idea."
09-06-2011, 02:17 PM   #26
Rebecca85
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I'll let you off since you're so helpful about other things. By the way, do you know if it's usual for PN to get worse with exercise? Even plain walking the dog means the pins and needles feeling spreads up my legs and my feet go numb.
09-06-2011, 02:32 PM   #27
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An EMG and nerve biopsy can be used to diagnose peripheral neuropathy but they aren't the be all and end all as they aren't always conclusive and pretty extreme when it comes to PN that can be linked to a definitive cause.

I have never known a diagnosis to be made based on anything other than presenting symptoms, to be honest it's not rocket science and there is no reason why it can't be, in most cases, diagnosed through history taking and examination. Most docs will diagnose this way...if you have the symptoms of PN and you are a diabetic...diagnosis, if you have the symptoms of PN and you have CD that affects the ileum then you should get a diagnosis. Easier said than done I know when it comes to IBD.

Push for the tests David has mentioned and no, oral will be of no use to you if you can't absorb via your terminal ileum.

Dusty. xxx
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