msjess

Centromere Antibodies?

26 posts in this topic

Thanks everyone. I appreciate the input.

 

I went to my primary care provider two days ago for my itchiness all over, and she put me on 6-days of prednisone. She "thinks" it is due to mold allergy, but also has put through another rheumatologist referral to another one in my area. (Last time, he wasn't accepting patients so I doubt it'll go through this time either). My former rheumatologist just sent out mail saying he's leaving the area, too, so even if I wanted to go back to him, I couldn't. My primary won't do any of the ANA testing on me either, which is what I had asked about before she said she'd do the referral. I really want to get a second round of testing done, to either validate the previous testing or give me some peace of mind... I don't know, it just really bugs me that I'm kind of stuck in some limbo here.

 

I really do appreciate getting a chance to come here and read the information here.

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Hi Msjess,

 

That's great that you have a referral to a new rheumatologist! :terrific:

 

Although you may not appreciate it at the moment, it is also terrific that she didn't order ANA labs. That is because your new rheumatologist may want to run more or different tests, and because rheumies have a very strong tendency to discard results from any other clinic or lab, and to only "believe" results from their own lab. So even if your primary reran the tests, the rheumatologist probably wouldn't believe the results anyway, which would only muddle everything for you.

 

A mold allergy does not sound like fun. I hope there is a source of mold that you know you can get rid of, because people can get extremely sick from it. We had mold problems one time and it turned out that it was over one whole wall of our place but hidden underneath the wallpaper. Not. Good. Stuff.

 

: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.

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Thanks Shelley.

 

I am currently suffering with this itchy-burning in my hands and feet, and it's keeping me awake all night. Seems the prednisone isn't touching it. It feels like it's just under the skin, and I do see very tiny bubbles of skin? I have looked up dyshidrotic eczema and it seems like that's what's going on here. I finished the prednisone already so I guess it's back to the doctor for me. And I called on the "referral," and apparently the other rheumatologist will look over my chart, but it's no guarantee he will even see me. I have already had one specialist two hours away make an appointment for me - then retract it a week later, saying he thinks I just have fibromyalgia. Another one told me I just have to take an antidepressant, when I am seriously only depressed BECAUSE of all the health stuff I'm dealing with, and all the uncertainty.

 

And I've since been reading a lot on the other antibodies that I tested positive for, in addition to the anti-centromere ones - the anti-chromatin antibodies - which are also known as anti-nucleosome antibodies. Seems there may be a subset of scleroderma that does test positive for that antibody, although I'm no expert for sure, I wish a doctor would just take my bizarre complaints seriously for once. Just one caring doctor. That's all I want.

 

In my mind, yesterday, I was cataloguing my problems these past few months and all of them - from the months of pleurisy to my huge mouth canker sore to the ear pains/likely ulcers to the migraines/trigeminal neuralgia headaches (ice pick headaches) to my on-again bouts with orthostatic hypotension and my chronic gi troubles - all of it seems to come back to this particular disease. I just can't understand why it is so hard to get a doctor to seriously look at me, talk to me about my problems and come up with a plan of attack. Instead, I feel like I am treading water, trying to keep my head above, but truly not able to advocate for myself effectively. I am just so frustrated. My heart goes out to all of you who have already been here, done this... it truly is disappointing to be treated so horribly by physicians who are supposed to be looking out for you, but just aren't...

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Hi Msjess,

 

The eczema sounds awful, I hope the doctor finds something to quell it. Definitely, if there are little bubbles, it is something other than scleroderma skin involvement.

 

That sounds rather difficult for getting in with another rheumatologist.

 

: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.

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Thanks Shelley. I'm at this point still not sure what's going on. Went to see the doctor a few days ago and she thought I may be having an allergic reaction to the vitamins the hematologist put me on after my IV Iron infusion. So I'm now off those. Meanwhile, still having some itchiness, though not as intense, and incredible amount of stiffness and pain and some burning in fingers mainly. There is no rash really on my fingers or soles of feet, but I do see mottling of the color and some whiter round areas, which seems to coincide with the pains I get.

 

I also had a cardiac stress test yesterday - where my blood pressure in the very middle went to 138/42? I'm guessing this is related to my neurally mediated hypotension, but now wondering if that problem is related to vascular changes in scleroderma too.

 

I also have been reading about morphea? And wondering about the type known as guttate morphea. I have been noticing over the past two years or so that my arms/hands and chest are seemingly maintaining a tan year-round (although if you look up close it's more of a cobblestone appearance), and recently noticed lots of whiter spots on my arms in particular. I will take a photo and try and post it in my album later to see if you can take a look and give me an opinion. I have another call into the new rheumatologist's office to see if they received my referral yet, but haven't heard back.

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I have posted a few photos of my red palms and soles that itch and burn, and the skin discolorations on my arms primarily.

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Well, in case anyone is reading this, I do believe I have figured out what is causing my most recent problem - erythromelalgia. Apparently it is closely related to Raynaud's phenomenon. I imagine that it happens pretty often in scleroderma, as Raynaud's does. Perhaps you guys could include a page about it in your information on similar skin diseases. Here is an example of the raynauds.org site that explains it http://www.raynauds.org.uk/associated-conditions/erythromelalgia-em

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Hi Msjess,

 

We have a few members who also have erythromelalgia, such as Amanda and Buttons. Although Raynaud's and erythromelalgia appear to be polar opposites, one precipitated by cold and the other by heat, they have a lot in common and can sometimes occur together.

 

The important thing to start with would be to get it properly diagnosed. One way they do this is to soak your hands in hot water for a spell, so they can see an attack in action, much like the cold water test for Raynaud's. Since that is fairly straightforward, you might want to consider offering to readily "prove it" in your doctor's office, to get the ball rolling on the topic.

 

: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.

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I have been having nerve pain so my orthopedic surgeon sent me to a Neurologist who basically ran some blood test that came back positive for ANA 1:16 and Anticentromere B at an 8 ( anything over 1 being considered high) so I was sent to a rhematologist, she looked at may nailbeds on my hand with gel and a magnified glass and checked my skin for thickening and said the test is a false positive ( I was tested twice and both times the labs came back the same) since I have no symptoms. My question is do many people test positive for anticentromere B and never develop any symptoms for limited scleroderma?  I do have hypothyroid and Fibromyalgia.

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Hi Bigprimmer,

 

Welcome to these forums!

 

I'm sorry to hear that you suffer with Thyroid disease and Fibromyalgia and I can understand your concern regarding your blood tests. However, blood tests are by no means conclusive and it is certainly possible to have positive antibodies and yet never go on to develop full blown Scleroderma and vice versa, as many of our members can testify. I've included a link to our medical page on Autoantibodies, to give you some more information.

 

Kind regards,


Jo Frowde

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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Hello Bigprimmer

 

Let me second what Jo has said, being someone with negative blood work and scleroderma. I have had scleroderma for 7 years and the whole time my blood tests, ANA & SCL-70 have been negative. During that time many people have visited these forums with positive blood work but no symptoms wondering the same as you, they never developed any.

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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