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PhyllisD

Blood Results and Worried!

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Hello All,

 

I'm so glad I found this site.  Everyone seems so supportive and helpful. 

 

Last year I received a positive ANA with a titer of > OR = 1:1280 with a CENTROMERE pattern.  Just recently had another test done and results were ANA Positive, CENTROMERE B ANTIBODY >8.0 POS.  I have Raynaud's and one of my toes turned purple and black last year.  I get joint and muscle pains, headaches, tight upper back pain, bad heartburn, dizzy and numbness and tingling in fingers and toes.  I'm wondering if anyone had similar lab results, experienced similar problems and what their diagnosis was.  I'm currently waiting to see a Rheumatologist but hear the wait can be long. 

 

Thank you all for any information you may have.

 

Phyllis

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Hi Phyllis,

 

Welcome to these forums!

 

I'm sorry to hear that you've had worrying blood test results and unexplained symptoms. Please understand that I have no medical training, apart from a now out of date first aid certificate, but I would reiterate the advice we always give about positive blood tests; although they help in the diagnostic process, they are by no means the be all and end all of a diagnosis, as scleroderma is extremely complex to diagnose and it is possible to have positive blood tests 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, such as Raynaud's, which does seem to affect the majority of scleroderma patients. We do have numerous threads on this subject.

 

I can understand how worrying these test results appear to be, but the best person to explain the test results as they interpret them in your particular case is your doctor or rheumatologist. If scleroderma is a possibility, we do actually recommend that our members, if possible, consult a listed scleroderma expert, to ensure that this complicated disease is treated correctly, by someone with the correct knowledge and expertise.

 

I've included a link to our medical page on Antibodies in Systemic Scleroderma, which I hope you'll find helpful and informative.

 

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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Hi Phyllis,

 

Welcome to the forum and sorry to hear of your  positive blood work, along with various symptoms.  I can only speak for myself,  when my son was diagnosed, but most readings on the web were very depressing and negative. I assumed he would die within a few years and that was 12 years ago, this month!

 

There are many others on this forum who have had it for 20, 30+ years.  Gareth had all the positive blood works, too, but only had internal issues - esophageal dismotility being the culprit that brought on the blood tests.  He's been on Plaquenil for 12 years and is doing pretty good, with only occasional issues.  Stress can play a factor in the disease, too, so try to keep that in mind.

 

Take care, everyone.

Margaret

Mom to Gareth, 30 years old, DS/ASD 

 

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Hi Phyllis,

 

I recently received the same results as you, with very similar symptoms. I have seen a Rheumatologist, as well as had the ‘standard’ Echo and Pulmonary Function tests, all encouraging. Right now, the Rheumatologist has me ‘on paper’ as having Undifferentiated Connective Tissue Disease, and will continue to watch for any new symptoms to point toward Scleroderma. The most important thing she told me was exactly what Jo said, which is that many live long, often uneventful lives, with this disease. And, knowledge is power! You can only treat the things you know about. I found this forum to be a godsend over the past few months also!

 

Cathy

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Thank you Margaret and Cathy.  Your replies have been very encouraging. 

 

I see Rheumatologist on December 12th at the National Jewish Health in Denver which is supposed to be very good in this area.  After reading all the depressing information online I decided to just wait and see what Dr. diagnoses.  If it's Crest or another autoimmune disease then I'll just deal with it one day at a time and try to live as healthy as possible.  I'll try to stay stress free too :wink:  If that's at all possible lol

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Margaret, like your son, I only have mostly internal issues and Raynaud's.  I don't have skin issues as of yet.  I wish all the best for your son and am happy to hear he is doing well.

 

Cathy, I'm happy to hear you are doing well to.

 

Best wishes and happy holidays to you both!

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For me, losing some weight (11kg) has helped and regular exercise have both improved my flexibility.

 

I need a lot more warm clothing now than I used to including thermal gloves, socks and hat when I go out.

 

The aches and pains are still there, but the more I fight them, the better I get. Having a positive mental attitude has taken me from deaths door to someone who has taken up an active sport.  It's a struggle, but the alternative is more awful.  Fighting is the only way.  If you give up, like I did at first, it is a horrible existence.

 

I don't have many skin issues yet and my cardiac and pulmonary functions are still OK.  I do have a lot of pain and stiffness and awful Raynauds in my arms, legs and face though and circulation to my eyes is a problem with deteriorating vision.

 

Keep positive though and enjoy life as much as you can as many people on this forum have lived with this for many, many years.

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Hi Cathy  & Phyllis

 

I want to add that having UCTD (Undifferentiated connective tissue disease) is no less severe than having CREST or scleroderma.  The hardening inside may flare up at anytime and cause issues.  Gareth's esophagus looks like a twisted curly straw and needs stretching when the swallowing becomes too hard and food sticks there. When he needed surgery to repair his neck (he needed a *ladder* installed to repair degenerative arthritis) it took the surgeon an extra 3 hrs to chisel through the *wood* encircling his trachea, esophagus, and carotid artery.  The internal changes aren't apparent till a doctor gets in there to work!!!

 

I know it's easy to say, but try to stay optimistic and trudge through the flares should one arise.

 

Take care, Everyone,

Margaret

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On 12/3/2018 at 12:57 AM, dimarzio said:

For me, losing some weight (11kg) has helped and regular exercise have both improved my flexibility.

 

I need a lot more warm clothing now than I used to including thermal gloves, socks and hat when I go out.

 

The aches and pains are still there, but the more I fight them, the better I get. Having a positive mental attitude has taken me from deaths door to someone who has taken up an active sport.  It's a struggle, but the alternative is more awful.  Fighting is the only way.  If you give up, like I did at first, it is a horrible existence.

 

I don't have many skin issues yet and my cardiac and pulmonary functions are still OK.  I do have a lot of pain and stiffness and awful Raynauds in my arms, legs and face though and circulation to my eyes is a problem with deteriorating vision.

 

Keep positive though and enjoy life as much as you can as many people on this forum have lived with this for many, many years.

 

Thank you, dimarzio, that is all good advice.  I agree that fighting is better than sitting back in defeat.  I will never do that, I will always fight.

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On 12/3/2018 at 12:16 PM, Margaret said:

"Hi Cathy  & Phyllis

 

I want to add that having UCTD (Undifferentiated connective tissue disease) is no less severe than having CREST or scleroderma.  The hardening inside may flare up at anytime and cause issues.  Gareth's esophagus looks like a twisted curly straw and needs stretching when the swallowing becomes too hard and food sticks there. When he needed surgery to repair his neck (he needed a *ladder* installed to repair degenerative arthritis) it took the surgeon an extra 3 hrs to chisel through the *wood* encircling his trachea, esophagus, and carotid artery.  The internal changes aren't apparent till a doctor gets in there to work!!!

 

I know it's easy to say, but try to stay optimistic and trudge through the flares should one arise.

 

Take care, Everyone,

Margaret"

 

Thank you Margaret.  I will definitely do my best to stay optimistic.  Happy Holidays!

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Went to my appointment with the rheumatologist yesterday and it turns out I have limited cutaneous systemic sclerosis (CREST syndrome).  Went for more labs, urine culture, chest xray and have future appointments for echo-cardiogram and gastrointestinal workup.  The Dr. wants to get results before moving forward with possible immunosuppressive therapy.  She did start me on calcium channel blocker and GERD medication. 

 

I want to thank everyone on this site for all your support.  

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Hi Phyllis,

 

Thanks for updating us with the details of your rheumatologist's appointment.

 

Whilst I suspect that you're not overjoyed at the prospect of having limited scleroderma, the good news is that once you have a diagnosis to focus on, it does remove the awful uncertainty, which I have found is the worst part of coping with an unusual disease. It sounds as if your doctor is up to speed with your further tests and hopefully, once a suitable medication programme is sorted out for you, you may find out that the disease does stablise a bit (this is what happened to me.)

 

Please do keep us posted about your treatments etc. and let us know how you're faring.

 

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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Hi again Phyllis,

 

Limited Scleroderma is certainly an unpleasant thing to live with, but there are a lot of things that are much worse.

 

My rheumatologist has told me that in his experience, limited scleroderma rarely results in the diffuse version and whether I believe him or whether that is true I don't know.  What I would say is that I will deal with what I have and not worry about future symptoms until they occur.

 

Keep strong and keep fighting.  Don't let it get you down. We all have our crosses to bear and need to deal with them as effectively as we can.

 

Enjoy today as much as you can and perhaps worry less about what tomorrow may bring.

 

I wish you good luck and a long and happy life.

 

Best wishes, Dimarzio

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