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ANA negative result!


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#1 MaryFanPhilly

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Posted 08 January 2010 - 04:38 PM

Hi Folks,
I know you haven't seen me in a while. I did move from the east coast to the west, finally, and am getting settled. VERY glad to be away from the terrifically cold weather you are experiencing if you're in the east, you surely have my sympathies.
Well I finally got myself hooked up with a rheumatologist and went to see her today. Unfortunately my records had not been sent so I had to fill her in on my past history.
Here's the thing. I had blood work done, and an ANA was run and came back NEGATIVE. I've had a solid history since diagnsis 5 years ago with positive ANA, not to mention several doctors agreeing that all my symptoms can be nothing BUT sclero- not mixed connective, not RA, and certainly not in my head.... the new doctor is now looking for all kinds of other diagnoses other than sclero, and hinted that I may have been misdiagnosed because of a negative ANA. The skin hardening could be 'mimic' symptoms from diabetes, the Raynaud's may be from some kind of blood clot etc etc. When we got to talking about the GI symptoms, the GERD with Barrett's I told her that one of my first symptoms was difficulty swallowing... she said, first symptoms of what, the Barrett's? Don't you all think she should know better??
My response was, well, I just don't trust your labs, I DO trust my doctors since they were all very involved in our sclero center back home, and I think you had better re-run all the labs before jumping to any hasty conclusions. Now I mistrust any labs that they ran. I can't say I have any particular trust in the new rheumatologist, either.
I know that doctors gauge their patients by what they see with their own eyes, and not what the patient tells them. But COME ON!
I put a call in to my old rheumatologist and asked them to please send along my last few blood tests including one that had an ANA on it.
Diffuse sclero; diabetes; hypertension; GERD with Barrett's

#2 Shelley Ensz

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Posted 08 January 2010 - 05:38 PM

Hi Mary,

I've had this happen myself and have known a lot of people this has happened to with scleroderma. I'm just dumbfounded by how a physician brand new on the case, who is usually not a scleroderma expert, who is often flying in the dark without a full medical history and usually without even an exam, can discount all prior diagnosis and come up with a whole collection of off-the-wall scenarios to merrily explain away dozens of symptoms, from a well-established diagnosis by knowledgeable experts.

Certainly, I could come up with all sorts of new rearrangements of my own symptoms into different diseases. In fact I'll bet most of us went through endless near or wrong diagnoses on the way to the one that finally settled, and appeared to satisfy everyone all the way around. Then, the new kid on the block throws mud on all of it -- usually over a blatant misconception (scleroderma always has skin involvement; your hands do NOT look like scleroderma; a negative ANA on one test means for certain you don't have scleroderma) and so on and so forth.

My advice? If they clearly don't know what they are talking about, ditch them. You aren't looking for a wild-eyed cowboy who shoots up every diagnosis in town to ride off into the sunset with no truly rational diagnosis to replace it.

I would only consider any opinion valid (for or against scleroderma) if it was truly backed up by research into all my medical records, an understanding why the diagnosis was made, and a real, up-to-the-minute understanding of the full spectrum of scleroderma symptoms. Lacking that, why, their hotshot seat of the pants undiagnosis simply does not hold water.

It's very hard to find a good doctor who really knows scleroderma; and I've even heard of the "undiagnosis" for people going to different scleroderma experts. If their undiagnosis argument is fully based on facts (that you can substantiate), if they have really reviewed your records and not just instantly jumped to conclusions; if they have a rational alternative diagnosis to explain things (exactly how many "coincidences" can someone have?), then you have to resort to your gut instinct. Do they have a reasonable point and we are just ignoring it? Are there really other possibilities?

After all, somebody has to be wrong here. Either all other physicians in your recent medical history, or this one new kid on the block who doesn't even know you, not to mention your full medical history, yet. So you are forced to pick one to believe.

Personally, I'd be far more inclined to go with the tried and true. Try not to let yourself get too upset about it. Realize you are not alone. When I encountered "interesting" doctors or ineptness, I'd just comfort myself with the line, "The truth will come out in the end."

And that is a comfort, because all we are seeking, as patients, is the Truth, so that we can live as long and as best we can. None of us want our diagnosis (or undiagnosis) to be based on lies or half-truths or gross misconceptions because that would impair treatment for our condition. So if/when you lose faith in any particular doctor, you can still hold onto your belief in the Truth, because it will come out in the end.

And we are all here for you, always.
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#3 Snowbird

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Posted 09 January 2010 - 01:14 AM

Hi Mary

Glad you are enjoying the move to the somewhat warmer climate. Just a tid bit, my specialist told me that once the ANA shows, it shows....I take that to mean it doesn't matter what it does after that because it did just that/showed itself....but of course as you know, she also stated that you do need other clinical symptoms for a diagnosis (more than bloodwork).
Sending good wishes your way!

#4 lizzie

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Posted 09 January 2010 - 02:01 AM

Hi Mary, I 'm really astonished at your new doctor's approach on discovering that you have a negative ANA. My ANA was positive (nucleolar pattern) when I was first diagnosed. However, over the last 3 years the test has been repeated 4 times- (they were looking to see if any specific antibodies had appeared). The results (in consecutive order) were: ANA neg; ANA+ (nucleolar pattern); ANA + (nucleolar pattern); ANA neg. These were all performed by the same lab. My rheumatologist has not been at all surprised by the fact that my ANA has veered from positive to negative and certainly has not considered revoking his diagnosis of scleroderma in light of the results. If it were me, I would be trying to find a new doctor.

Lizzie

#5 Avalanche

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Posted 09 January 2010 - 02:36 AM

Hi Mary,

I am in undiagnosed limbo, having been to a million doctors, and finally seem to have found an internist that wants to get to the bottom of my problems. He is sending me to several specialists,
and wants a letter from each one. Do you think you could get your other doctors to write letters about your case, instead of just sending lab work?

That way it would all be in technical doctor-ese, and the new doctor might get it!

Good Luck,
A

#6 ladyhawke

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Posted 09 January 2010 - 03:48 AM

Hi Mary,

WOW....Well said Shelley!!! I can't add anything to that, just my total agreement. Hopefully when your new doctor gets the medical history in, she will rethink what she has said. How can anyone come up with all those things without seeing your history? WOW! The sad part is that we depend on these doctors and put our lives in their hands. I hope she goes over your records and doesn't think that she is the "all in all". Sounds like you have some good sclero doctors in there, hopefully she will see that.

Good Luck,

Lisa
Life is NOT meant to be a struggle. Life is meant to be joyously abundant.

#7 Margaret

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Posted 09 January 2010 - 06:01 AM

Hi Mary ,

Gareth had 2 positive ANA's initially, but was negative last Jan '09.

Take care, Everyone.
Margaret

#8 MaryFanPhilly

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Posted 09 January 2010 - 06:07 AM

Whew! Thanks, I knew you would come through, and Shelley, well, you truly wrote a very eloquent post that I would love to show the new cowboy. I did not think that an ANA could be 'undone' or that sclero could just disappear. She is, I think, simply trusting her own labs and not her eyes or instinct, let alone other doctors- or me. She probably thinks I went to a quack who did a hasty diagnosis-- trying to look at it from her point of view. I will return to her next month to see the new lab results and by then she will have had some records sent from my past doctors. If I am still not satisfied I have a recommendation from my rheumatologist in Philly to someone in San Francisco. They are two hours away and out of network but I won't keep messing around if I dont feel comfortable with the new one.
Lizzie, I can imagine that your head is swimming, as well as yours, Avalanche.... I had considered myself one of the lucky ones to have found a solid diagnisis in a relatively short time- 8 months. But once I found the right doctor, like finding the right pair of shoes,it was all good. I did offer her to call my doctors in Philly. I almost asked her to do an internet search of his name and read some of his articles and research papers, but I thought that would be too over the top.
I'll keep you posted, now I have to find a GI and Cardio. sighhhhh.
Many hugs,
Mary
Diffuse sclero; diabetes; hypertension; GERD with Barrett's

#9 Amanda Thorpe

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Posted 09 January 2010 - 01:11 PM

Hello Mary

Well I've always had a negative ANA so that must make me a real good faker...oh and of course all my doctors must be dipsticks..needless to say neither is true.

What I find most irritating about your encounter is that the doctor dismissed you and your knowledge of your present condition, this type of attitude in a doctor is hard to overcome. As has already been said move on if it continues but make sure you make the best of your exit. Plan out now what you're going to say then and go for it!

Take care.
Amanda Thorpe
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#10 warmheart

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Posted 18 January 2010 - 05:22 PM

Hi Mary,

Sorry I'm coming into this discussion so late.

Amanda, that's interesting that you've always had a negative ANA. My primary care physician ordered one once on me a year or two ago, and it was negative. I'm still really confused about how significant it is to have a positive or negative ANA. If you or anyone else could explain this, I'd be grateful. Thanks a lot!

Hugs,

warmheart :)

#11 Honey

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Posted 20 January 2010 - 03:45 PM

Hi, warmheart.

There are so many things associated with our disease that I wonder about, such as the ANA testing and why it is so different for so many people.

Like Amanda and you, I, too, am ANA negative as well. I understand that it is not the only tool used to determine or confirm diagnosis, obviously, since maybe 10%-40% come back negative. It is considered secondary to the clinical features when diagnosing scleroderma. Further testing should always be performed. There are some "false positives" that come back for people without any autoimmune signs or symptoms, and many who are diagnosed with diffuse scleroderma without the specific detectable antibodies within the cell. It is something to ponder, indeed.

A skin biopsy subsequently confirmed my diagnosis (diffuse scleroderma) after my rheumatologist listened to my clinical symptoms and history, looked at my feet and joints, and made the supposed diagnosis the first time she saw me.

Warm regards,
HONEY

#12 red

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Posted 21 January 2010 - 12:05 AM

My ANA and other blood tests have always been negative too (except for elevated sed rate), but have been diagnosed withsclero based on clinical symptoms and GI tests. I've been on inhaled steroids for 30 years for asthma, and also am on oral prednisone several times a year as well -- I'm wondering if long time steroid use causes changes -- maybe the steroids suppress the inflammatory response measured in the blood tests? Does anyone know?

red

#13 MaryFanPhilly

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Posted 21 January 2010 - 03:35 AM

Hello Gang,
Everyone brings up great points. I can't imagine how an ANA goes from positive to negative and back again, except that my former rheumatologist said it's a rare test and very dicey for a lab to do. I don't think it's our antibodies coming and going! My conclusion is that perhaps it varies not only from lab to lab but within the lab itself? Could that mean missed diagnoses for some of us? However as stated before, it's a SMALL part of the whole picture, and it takes a really good clinician to see it. I've decided this rheumatologist is not for me, she ran some crazy tests (snake viper thingy?? what??!!) and is just too wackadoo for me. So the hunt goes on... and I will ask the next rheumatologist this very question.
Have a warm day everybody.
Mary
Diffuse sclero; diabetes; hypertension; GERD with Barrett's

#14 warmheart

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Posted 25 January 2010 - 10:05 AM

Hi everyone,

Sorry for the very belated thank you, but thank you all! All your input is so helpful, and I really appreciate it!

Hugs,

warmheart :thank-you:

P.S. Mary, snake viper thingy?! ;) Seriously?

#15 MaryFanPhilly

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Posted 27 January 2010 - 05:18 PM

No lie. It was called a Dilute Russell Viper Venom Time test. Apparently it has something to do with anticoagulants and tendency to thrombosis, or something like that... she said it was to 'find out why I had Raynaud's' as if I HAD NO IDEA WHY.....!!!! Now I can laugh about it but for real, if she got ahold of someone who had not yet been diagnosed or was newly diagnosed.... I shudder to think. Mary
Diffuse sclero; diabetes; hypertension; GERD with Barrett's

#16 Shelley Ensz

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Posted 28 January 2010 - 04:19 AM

Well, my goodness gracious, land sake's alive, Mary. That test isn't for Raynaud's (to the best of my no-medical-training knowledge) but rather is mainly used to help detect things like antiphospholipid syndrome (APS), which can occur by itself or along with things like lupus and scleroderma. It's not an altogether bad test to have, especially if you've had other issues like blood clots, strokes or TIA's, or miscarriages, all of which can potentially be a part of APS.

It might be a handy test to have if you have had any of those symptoms; but not in a lame effort to undiagnose your established scleroderma diagnosis. Now, exactly when can you get in with a decent new doctor?
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.