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Undiagnosed and with high anxiety.

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Hello all, I am brand new to this forum and figured I should join since I’ve been googling for a few weeks and sclero.org shows up in almost every result!


I’ve been googling because I’m so confused and I’m looking for answers that I’m afraid might not be readily available. I apologize in advance because I feel like my story is long and frustrating. I’m female, aged 33. Earlier this spring I started getting a series of facial flushes with alcohol consumption or cold weather. My primary diagnosed me with rosacea and he also prescribed some metrogel. Two weeks later I called his office again asking for a referral to a dermatologist. He denied me a referral and said he wanted to do some blood work first to rule out lupus, just in case. Lo and behold my ANA came back positive, with a speckled pattern. He then did a panel of tests for RF, double stranded DNA, CBC, etc, all which came back negative or normal. He referred me immediately to a rheumatologist anyway, and it took some months to get in. 


I spent a lot of time with anxiety expecting some sort of lupus diagnosis. In the meantime I did get into a dermatologist who is treating me for rosacea with finacea gel and my progress there has been dramatic. 


In September, some months after rosacea treatment, I got into my rheumatologist who assured me I wasn’t going to have a lupus diagnosis because, quite frankly, I don’t have any AI symptoms, let alone meet any of the diagnostic criteria (since ANA alone isn’t enough).


He did a physical examination and ordered a bunch of blood work. He mentioned that ANA alone isn’t enough for a clinical diagnosis but if it was still positive he’d want me to check back in a year just to keep tabs on me. 


Unfortunately, when I got my results back, not only was my ANA positive at a high titer (higher than my first test!), also there was a positive result for CENP-B. My internet research has taught me about limited scleroderma and CREST, etc, but my rheumatologist still doesn’t want to see me for another year. 


I’m so freaked out. I know logically that I should just adopt a strategy of watchful waiting if I should start to develop symptoms but I feel like such a ticking time bomb. I don’t know what’s in store for me. My friends and family all say that I should just keep it in the back of my mind and to live my life but I’m seriously struggling. Are there people like me on these boards? Scared and waiting around?



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Hi Lacey,


Welcome to these forums!


Whereas I can understand your alarm at the results of your blood tests, I would reiterate the advice given by your rheumatologist regarding the diagnosis for autoimmune diseases, including scleroderma. Although blood tests do have some relevance in the diagnosis of scleroderma, they are only a very small part. This is because it is perfectly possible to have positive antibodies and yet never go on to develop the full blown disease and vice versa, as many of our members can testify. Far more important are the clinical signs and symptoms of the disease and as it would appear at present that you're not experiencing other symptoms, then a policy of watch and wait is probably the best solution for the immediate future. In any case autoimmune diseases (and scleroderma in particular) are notoriously difficult to diagnose; I believe the average time to reach a diagnosis is six and a half years. We actually have numerous threads on this subject.


One thing that is certain to exacerbate any illness is the stress involved in trying to find a diagnosis, as stress and anxiety can cause hormonal and cellular changes in our bodies which can lead to a variety of medical problems and is particularly damaging for autoimmune diseases. As for not knowing what's in store for the future, I'm afraid we none of us know that.:wink:  It's perfectly normal to experience depression and anxiety along with illness and so it may be beneficial for you to ask your primary care doctor for a referral for counselling if you're finding that your health issues are difficult to deal with.


Kind regards,

Jo Frowde

ISN Board Member

ISN Secretary of the Board

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Thank you so much for your reply! This is all so new to me and the picture that Dr Google paints is so grim! The anxiety comes in waves and though I am feeling much more level headed today than at my first writing last night, I am going to sign up for some counseling. The anxiety part is absolutely not fun!


I guess in the end I should count myself lucky because I have a good rheumatologist that I like (and is on the Sclero list of specialists!), I currently don’t have symptoms (which sound horrible, I hope I didn’t come off as insensitive), and I have a good support system. 


Thank you so much!

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Hi Lacey,


Welcome to Sclero Forums.  I'm thrilled that you're seeking counseling to learn how to reduce the anxiety inspired by the potential threat of autoimmune disease. Anxiety can totally trash our quality of life, and like Jo mentioned, can actually cause negative changes in our health. Kudos to you for recognizing it's impact on you and taking restorative action!


Resilience doesn't come naturally to me, so I'm very thankful that it is a skill that we can all learn. I have a whole arsenal of tricks to create resilience now -- and one of the best first tools I ever discovered was seeking a good counselor to help guide me through major life changes, and then even minor disruptions that I found more problematic than others.


For those reading this thread who have just realized they could benefit from some counseling to restore their equilibrium (or perhaps even discover it for the first time) but who don't know where to turn, usually primary care doctors are a good resource for referral to an appropriate resource.  They can generally help us decide if we could benefit from full blown psychiatric testing and evaluation, or just "regular" counseling, etc.


Learning new ways to develop resilience will serve you well, no matter what comes your way in life!




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.

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