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Ana Negative Results With Mixed Connective Tissue Disease


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#1 Nancy K

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Posted 02 March 2007 - 11:45 AM

Hi! I'm new to this site, but not the illness. I'm 39 and have been ill all my life with systemic connective tissue problems like, vasculitis, Raynaud's, Sjogren's, GERD, a severe motility disorder that the doctors say is related to Scleroderma, Iron-deficiency Anemia, B-12 Deficiency, Osteoporosis, lupus-like symptoms- rashes, joint pain, swelling, fever, fatigue & cardiac symptoms- tachycardia and PVCs, along with surgeries on both elbows and right calf due to tendons tightening and tearing...It goes on and on, as you all know!

My problem is that I do not have a positive ANA result. Whenever the doctors have done the various lab tests, they are within normal limits, except for SED rate, RBC, & WBC & Iron & B-12. So, I have never been given a real diagnosis. I was first told, when I was 8, that my body was reacting to stress (my fevers & pain were imagined), then, when I was 14, I was told it was Still's Disease and I would grow out of it. Then, when I got vasculitis and a butterfly rash, it was Lupus. Next, it was Undifferentiated Connective Tissue Disorder, then it was MCTD, then it was maybe Sarcoidosis (as I have Granulatomous Liver Disease- also non-specific diagnosis), and now no doctor will take responsibility for me, because no real overall diagnosis has ever been made.

Last year, I lost 25 pounds in 3 weeks, for no apparent reason, and had periodic episodes of vomiting that could only be stopped with IV drugs at the ER. It took 6 months of my pushing to get the doctors to look into what was going on with me. Finally, I was given a breath test and found out I had SIBO (Small Intestinal Bacterial Overgrowth) due to my GI Motility Disorder. So, I was put on an antibiotic, Zelnorm, and a liquid diet and told it was Scleroderma by the GI doctors at Shands. But, my rheumatologist is not convinced it's Scleroderma because of the lack of evidence in my labs. I am still losing weight and having more issues because of the motility disorder- It took a year of convincing my rheumatologist and a bone marrow biopsy to determine that I have no iron! I am now getting IV iron infusions once a week along with a weekly B-12 shot. My Raynaud's is much worse, and I'm on Procarida XL for that. Also, my teeth are literally disintegrating. I've had 3 decay and abscess in 3 months, and I never had issues with my teeth.

So, I have all the sickness, and yet I cannot actually classify my disease. I can't even say that I belong to this group, because most everything I've read here says that I must have a positive ANA result in order to rate! I have been sick my whole life, but SOOOOO much worse this last year, and still, I can not find an answer. So, if anyone has any input, or can direct me to some resource that I can use to reference for my next doctor appointment, I would be eternally grateful!

Thanks in advance,

Nancy wacko.gif



#2 Sweet

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Posted 02 March 2007 - 12:58 PM

Hi Nancy,

Welcome to the Sclero Forums. I am so very sorry you are battling so much at once! My goodness you do have a lot to deal with.

The end all and be all of autoimmune diseases does not rest on having a positive ANA, so don't put too much stress on that. :) Lab tests play only a part in properly diagnosing a person with an autoimmune disease. Symptoms also play a very large role. Your rheumatologist should be very well aware of this.

Look forwarding to getting to know your better - and again welcome.
Warm and gentle hugs,

Pamela
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#3 Heidi

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Posted 02 March 2007 - 01:10 PM

Hi Nancy,

Welcome to the forums! I am so glad you found us and joined in, but sorry it is because of all of your diagnoses, illnesses. Wow! You have had a lot thrown at you and for such a long time! You asked for some resources. I do not know if you have had a chance to peruse our Sclero Medical Directory but it contains a wealth of information! Also, are you seeing a rheumatologist who specializes in scleroderma? That might be something you want to look into. Here is a link to scleroderma specialists. Someone who has a lot of knowledge of scleroderma would know not to put too much emphasis on the negative ANA as Sweet suggested.

Please do keep us posted on what you decide and what is being done for you.

Again, welcome!

Warm wishes,
Heidi



#4 Nancy K

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Posted 02 March 2007 - 01:51 PM

Thanks! Unfortunately, it's not me who puts the emphasis on the ANA, but every doctor I have ever seen. I can't get a Rheumatologist to take my case because they say my labs don't point to a diagnosis. Seems crazy to me, but it's true. I've been kept out of studys and clinical trials based on the ANA negative status. Believe me, I know that shouldn't be the focus, but it has been my whole life. So, if you can name a few doctors, hopefully, in Florida, who can overlook that, I would be much obliged! Thanks again, and I'll check out the doctors on this site too!

Nancy

#5 janey

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Posted 02 March 2007 - 02:56 PM

Nancy,
Welcome Darling! I am so glad that you have joined us. It's a great place for support and information.

Wow - you've been through a lot for being only 39. I'm sorry that you are having to deal with so many physical problems and not have any really diagnosis. We've all been there at one time or another and it can be frustrating. The important thing is that the doctors do continue to treat the symptoms. If they don't - get another doctor.

In reference to the negative ANA - You might find this article interesting. I would suggest printing it out and taking it to your next appointment. It comes from PubMed, one of our medical research databases.

Diagnostic significance of antinuclear antibodies
"Literature data indicate that the positive predictive value of ANA for the presence of CTD is 5-10%. Conversely, a negative ANA result does not rule out that CTD is present (negative predictive value: 98.5-99.3%)."

Hope this helps. Please keep us informed on how you are doing and please do not hesitate to visit us anytime. We're here for you.

Big Hugs,
Janey Willis
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#6 nan

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Posted 02 March 2007 - 04:26 PM

Nancy,
You have come to the right place. I am so sorry you are having to deal with so much. I went to Johns Hopkins in December 06 and the doctor there diagnosed me from her examination of me and my symptons. She took bloodwork and urine samples after the visit, but gave me a diagnosis without the results of bloodwork. It just so happened that my ANA was elevated that time, but other times it hasn't been elevated. You need to find a doctor that will look at YOU and your symptons, not just count on the bloodwork for all of the answers. Please take care of yourself and I hope you can find a good doctor.
Nan

#7 scleroguy

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Posted 03 March 2007 - 06:10 AM

Hi Nancy,

I am so sorry that you have had to deal with so much. I have MCTD, and my doctors had me starting to believe that I was depressed or crazy until my anti RNP came back positive. I have never had a positive ANA.

I was wondering if your doctors have run any other test like anti-RNP?

Best wishes,
Ron

Updated 8/10/07: Mixed Connective Tissue Disease (dx 03/2002). Diffuse Scleroderma, Dermatomyositis.

#8 Nancy K

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Posted 03 March 2007 - 07:02 AM

Yes, it seems I have finally come to the right place! Thanks so much everyone for the support & encouragement- It's been a long time coming! Glad to hear there are others who have had the same experience with the tests & doctors. I will definitely print the article and take it to Shands with me next week. I never give up that at some point, someone will just step up and give me a diagnosis, but as my condition worsens, it just gets more frustrating. Again, thanks to much everyone, and I will definitely stick with this group!

Love,
Nancy :rolleyes:

#9 emmie

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Posted 03 March 2007 - 05:47 PM

Welcome, Nancy. You've gotten some great advice here. And I hope that article Janey referred you to helps get you out of diagnostic no man's land. Anyone who has spent any time at all there knows how frustrating that place is.

I'm glad you found your way here. It is a great bunch of people with so much to offer. Good Luck next week. Let us know how it goes.

xoxo emmie

#10 debonair susie

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Posted 04 March 2007 - 11:45 AM

Hi Nancy,

How true... there are a great group of folks here and I'm so glad to see that you now feel hopeful after having received support/information. Janey and Scleroguy were especially helpful!

My internist sent me in the right direction when she admitted whatever was going on with me was over her head. However, the doctor she sent me to really knew his stuff! Even though I've never received a positive ANA result, there is no doubt I have Scleroderma. Furthermore, as Janey mentioned, you should be treated for the symptoms.... regardless.

I wish you the best :D
Hugs, Susie
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Susie Kraft
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