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Please help with test results!

undiagnosed positive ANA SCL-70 blood test Osteogenesis Imperfecta

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#1 leaird

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Posted 24 January 2013 - 12:15 AM

Hello. My name is Elizabeth and I am a 36-years-old. I started experiencing joint pain in my hips 16 years ago. I was pregnant at the time. Over the years the joint pain has spread. My areas of most trouble are my wrist, knees, and shoulders. I also experience IBS symptoms quite frequently. I also have Raynauds which mainly affects my toes. My toes get numb when exposed to cold and get very pale. They never turn blue or purple.

I guess I really should have gone to a doctor earlier but I thought I knew what the problem was. My daughter broke 3 bones by the time she was in Kindergarten. The orthopedic doctor told me that he thought she had a mild case of osteogenesis imperfecta (brittle bone disease). Brittle Bone Disease is hereditary so I assumed she got it from me. Since brittle bone disease affects bones in childhood and joints later in life, I thought I had my answer for my joint problems. There is no treatment for mild osteogenesis imperfecta so I never bothered to get tested. I managed my joint inflammation and pain with supplements because I don't like to take prescription medication with bad side effects.

At my physical in December, my doctor decided to run a ANA test due to my daughter's suspected connective tissue disorder and my joint problems. It came back positive so she referred me to a rheumatologist. The rheumatologist ran more tests. I have an appointment to discuss the results next week. Since the results are already back, I requested a copy of them so I can research things on my own before my appointment. Maybe that was not such a good idea because the results are scaring me to death. My flagged items are as follows:

ANA - 1:80 homogeneous pattern
Antiscleroderma - 70 Antibodies: 1.3

Leuk estera: 1+
White Blood Count: 3.5 in December/5.2 in January (this is no longer out of range)
Neutrophils: 1.8 in December/3.1 in January (this is no longer out of range)
ALT (SGPT): 10
Vitamin D, 25-Hydroxy: 24.0
Ferritin: 12 ng/ml (Hemoglobin was 12.9, which is within range)

I am new to all of this autoimmune stuff. From what I have read, this is what I think my results mean:

The ANA titer is low, which is a good sign. The Homogenous pattern is most often seen in healthy patients who test positive for ANA. However, it can also indicate Lupus and Mixed Connective Tissue Disorder. While out of the normal range, the SCL-70 score is relatively low. I have no symptoms of scleroderma that I recognize. My ANA pattern does not indicate sceroderma. This indicates is that I am more likely to develop scleroderma in the future, but it may never happen. I am hoping all of this points to me NOT having scleroderma at this time. Am I interpreting this correctly?

I started taking the following supplements after my December physical:
Multivitamin
Fish Oil
Vitamin C
Vitamin D3 (2,000 IU/day)

I added the following since reviewing these new results:
an extra Vitamin D3 (now taking 4,000 IU/day)
Evening Primrose Oil
Iron
Probiotics with Fiber

What other supplements would you recommend to regulate my immune system and take care of nutritional deficiencies? I would like to limit prescription medications as much as possible because I tend to have negative reactions to them.

Are there any reliable websites or books that will help with choosing supplements and diet modifications?

Are there any specific tests I should ask my rheumatologist to run? She already did testing for Celiac Disease and all of the results were within the normal range.

I have made an appointment for my daughter with a Pediatric Rheumatologist who specializes in Connective Tissue Disorders. I am not so sure that she has Osteogenesis Imperfecta anymore. After seeing some of the horrible effects of different Connective Tissue Disorders and Autoimmune Disease, we need to know for sure what we are dealing with. They can't see her until the end of March so we have a bit of waiting to do.

Thank you for any insight you can provide into all of this.

#2 Shelley Ensz

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Posted 24 January 2013 - 11:16 AM

Hi Elizabeth,

Welcome to Sclero Forums! I'm sorry that you have concerns about connective tissue disease and scleroderma, and send my best wishes to both of you. As it happens, I have no medical training at all. Interpreting your test results means also considering your entire medical history and current symptoms so that simply has to be done by your doctor. I know the waiting game is horrible and you sure have my sympathies for that.

We have a section on our main site for Scleroderma Food Guide and Scleroderma Supplement Guide. However, that info is not intended to replace your doctor's advice so be sure to tell them all the supplements you are on and ask them about any others you might be interested in. As we say on our Supplement page, "The most important thing to know about supplements and scleroderma is that the immune system does not need to be improved in scleroderma, because it is already overactive." We are not aware of any food program or supplements that will vanquish scleroderma, although some may be helpful to avoid or take to help manage certain symptoms, such as avoiding all vasoconstrictors (such as caffeine and nicotine) to reduce attacks or severity of Raynaud's.

Dealing with the stress of even the idea of a more serious disease, whether or not it ever comes to fruition for either you or your daughter, can be very difficult. We sure can't tell you how to manage that sort of stress, but be aware that the stress of this could be more damaging than any underlying medical problem. So it is time to pull out every trick you know for managing stress well. You are already doing at least one excellent thing in that regard, which is seeking our support.

We are in this together with you and your daughter. I hope you find that a little bit helpful and reassuring.

:emoticons-group-hug:
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 Joelf

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Posted 25 January 2013 - 12:43 AM

Hi Elizabeth,

Welcome to these forums!

I can understand how very worrying it is to receive results which you don't understand and as Shelley has said, your rheumatologist is really the only person who can explain them to you. The only thing I would add is that we do have members who've shown positive blood tests and never gone on to develop the full blown disease and vice versa, so blood tests are by no means conclusive in a diagnosis of autoimmune diseases.

Shelley has given you a link to our medical page on supplements and excellent advice about them, to which I'm afraid I can't add anything more. I do hope that your appointment with your rheumatologist goes well next week and also that your daughter's appointment with the pediatric rheumatologist is productive. Please do let us know how you get on.

Kind regards,

Jo Frowde
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#4 Shelley Ensz

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Posted 28 January 2013 - 07:31 PM

Hi Elizabeth,

Have you been able to discuss your test results with your rheumatologist yet? If so, how did it go? I am sending some more warm hugs your way!

:emoticons-group-hug:
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.





Also tagged with one or more of these keywords: undiagnosed, positive ANA, SCL-70 blood test, Osteogenesis Imperfecta