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msjess

Centromere Antibodies?

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Hi folks, I hope it is ok that I joined, as I have a few questions about diagnosis. Currently, my only diagnoses are hashimoto's thyroiditis and fibromyalgia. A year ago, my GI doctor ran ANA testing on me, which turned out positive 1:640, and I was sent to a rheumatologist for evaluation and more testing. His tests showed extremely high anti-chromatin antibodies and just over the range for centromere antibodies, along with ss-DNA antibodies. At that time, I was unaware what the centromere antibodies were, and hadn't thought much about them for the past year, but as I read more and more I wonder if centromere antibodies are found in people who don't have CREST. The rheumatologist said I probably had drug induced lupus at some point, and that was the reason for the high chromatin antibodies, however he never really addressed the centromere antibodies.

 

My symptoms to date:

 

A long history, going back to childhood, of really cold hands and feet... sometimes they turn colors or get really hot after any prolonged exposure to cold. I'd say my nose, ears and face are somewhat affected by this sensation too. I figured I had raynaud's phenomenon but didn't know much about it... later I attributed it to my hypothyroid.

 

Other miscellaneous symptoms, which haven't been attributed to my thyroid, include gastritis/duodenitis and IBS pains; difficulty breathing at times, typically seasonally in spring and summer, with last summer topping off with chest pleuritic pain that was never explained; extremely dry hands and feet; peripheral neuropathy of unknown reason; orthostatic hypotension episodes that sometimes lead to fainting. I also have had a year's worth of unexplained "adult acne" and random red spots showing up all over my body, including face, lips, arms, hands, chest.

 

I guess I am now wondering if I could possibly have CREST, due to the centromere antibodies, the GI problems, lung issues and possibly red spots on body? I haven't seen any sclerodactyl or calcium deposits at all. Is this something I should discuss with my primary care?

 

Thank you for reading and for any advice.

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Hi Msjess,

 

Welcome to Sclero Forums. According to the Mayo Clinic, Centromere Antibodies, IgG, Serum, centromere antibodies can occur in scleroderma, lupus, rheumatoid arthritis, and primary biliary cirrhosis. They are not very common in healthy people, however they can turn positive a few years before clinical signs of scleroderma.

 

It would be a good idea to discuss things with your primary care doctor. You can download and print your own copies of our What is Scleroderma? brochure, which includes a handy systemic scleroderma symptom checklist.

 

Primary care doctors can help by diagnosing and assessing Raynaud's and ruling out other causes of your symptoms. Allergies and acne wouldn't be caused by these sorts of illnesses, but the other things you mentioned might be. Certainly things like dry skin, allergies, acne, and IBS-type pains are common in normal, healthy people. But they might be able to help figure out the cause of your peripheral neuropathy, or rule some things out. For example, the neuropathy might be caused by Raynaud's or by carpal tunnel syndrome, either or both of which might point more in the direction of scleroderma. And then, if need be, they might refer you to a scleroderma expert.

 

But, they might find -- just for an example -- that the neuropathy is caused by diabetes, in which case your care would go off in an entirely different direction.  So don't pin your hat on scleroderma.  Keep your mind open to all the possibilities which range from normal issues of basically healthy people, to other illnesses, to arthritis-type diseases like lupus and scleroderma.

 

They  might run a dozen very serious tests, only to prove in the end that you are not seriously ill.  Your centromere antibodies may have even vanished! So please do your best to keep your attitude steady, as even the question of some illnesses can be very challenging to cope with in an emotionally healthy fashion.

 

: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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Hi Msjess,

 

Welcome to these forums!

 

I'm sorry to hear that you've had worrying health symptoms. Unfortunately Scleroderma is a very difficult disease to diagnose, even with specific symptoms, as it does affect everyone differently. Also blood tests, although helpful, are by no means conclusive as it is quite possible to have Scleroderma and yet have negative blood tests and vice versa, as many of our members can testify.

 

As Shelley has advised, I would suggest that you consult your primary care doctor and then he can decide the next course of action for you, depending on the symptoms you're experiencing.

 

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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Hi Msjess,

 

Have you managed to make any progress on this yet, such as making an appointment with your primary care doctor, to discuss your concerns?

 

: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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Thank you all for your responses. I have a doctors appointment set up for this week, but am not sure if I should address this issue. I feel like a hypochondriac sometimes, I have so many complaints about my health.

 

My appointment this week is because I have orthostatic hypotension and sometimes black out upon standing. This month has been worse than others, so I am asking for a referral to a cardiologist. I also have had horrible luck with rheumatologists since my testing last year. The rheumatologist I first saw was incredibly rude, and I didn't have any better feelings about the second opinion. Both appointments I had to wait 4-6 months to even get in with them, because that specialty is so rare in my area.

 

Since writing initially to you guys, I have noticed some callouses on the palm of my hand, which I am not sure where they came from. Also, I have many many callouses on my feet at the moment. Are extensive callouses (not related to hard physical work) a sign of scleroderma/Crest?

 

I also have an unexplained bump on the outside of my right wrist, which has been there for about 5 months. When I showed the doctor a few months back she said it was probably just a ganglion cyst?

 

Another thing, I have terrible carpal tunnel which first showed up in my mid-20s, and that was back when they first said I had fibromyalgia as well.

 

All of this is just so overwhelming some days, I just deal with the symptoms and don't even bother mentioning them to my primary any more.

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One other thing, I've also this week re-started gluten free diet. Although I didn't test "positive" for celiac antibodies or on the biopsy, I know I felt much better when on gluten free two years ago. And I just noticed there are connections between gluten/celiac and also scleroderma and Hashimoto's. Very interesting.

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Hi Msjess,

 

I'm sorry that you've had a less than sympathetic response from your rheumatologists'; whether or not they consider that you are actually suffering with Scleroderma, it still does not excuse their rudeness to you, especially as you're obviously anxious and worried. I've included a link to  Orthostatic hypotension and I do hope that your doctor will be able to help and advise you with regard to it.

 

Even though people with Scleroderma would typically have callouses, it does not mean that it's a symptom of Scleroderma, or even that it is caused by a disease process. Callouses can be symptomatic of many other things as well; however, please note that apart from an out of date first aid certificate and a strong desire to tell my medical team how to do their jobs, I have no medical training, so I can't really advise you as to whether or not your symptoms relate to Scleroderma.

 

I've also included a link to our medical page on Gluten Free Diet which I hope you'll find helpful and informative.

 

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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Hi Msjess,

 

Most of us here understand how hard it is to sort out symptoms, as to which ones are possibly related to connective tissue diseases, and which ones are not.  You must bear in mind that I *still* haven't received my Internet Medical Degree even though I ordered it a few weeks ago <sigh> and take it all with a grain of salt.

 

As it happens, there is no relationship between calluses and scleroderma. Calluses can be healed, and go away.  Also, scleroderma does not cause ganglion cysts. They are very common and in olden days, they used to treat them by thumping them with a very heavy book. You might remember your grandparents talking about that?  Thankfully the treatments now are more mericiful.

 

Carpal tunnel can sometimes be caused by scleroderma, but scleroderma would typically be the rarest of the possible causes of carpal tunnel. Interestingly for you, ganglion cysts can cause carpal tunnel. See Causes of Carpal Tunnel by WebMD. And carpal tunnel is also more common in people with fibromyalgia than in the general population. I don't know, couldn't say -- both because I'm not a medical professional of any sort and because this is just the internet, of course -- what is causing the carpal tunnel in your particular case and whether or not it could be related to possible scleroderma for you.

 

Unfortunately, it does take a rheumatologist to diagnose scleroderma. If at some point your primary care doctor feels you have racked up enough specific symptoms of scleroderma, you might want to ask them to refer you to a listed scleroderma expert.  Bear in mind that many specialists become so engrossed in technical aspects of their specialties that they may lose sight of common human courtesies and come off as rude or condescending, etc. But you aren't looking for a new best friend, you are only looking for an apt scientific appraisal of your symptoms and any possible underlying illness that might be tying them together.

 

Working with your primary care doctor to more clearly define some symptoms, and their possible causes, could be helpful.  For example, perhaps they could refer you for vascular lab testing which could prove that you have Raynaud's, rather than having it just be referred to as cold hands and feet, because simply cold hands and feet are not a scleroderma symptom, but Raynaud's is.

 

Also, sorting out the important from the negligible may be of primary importance for you. That is because hypochondriacs can see every single symptom as a sign that they are going to die, immediately. But mentally stable sick people sort things out carefully, as to what symptom is the most troubling, which symptoms need further testing, what deserves mention but is not very important, and things that are simply not important at all. 

 

You can see how a hypochondriac would not make progress even if they did develop a serious illness, because they wouldn't know how to sort things out to develop a reasonable plan of attack. And unfortunately, many doctors lean on a perplexing thought that anybody with three or more symptoms at once, must be a hypochondriac.  I don't know how they come up with that since any disease worth its salt would have more than 3 symptoms!  But the mere thought should be enough to slow most of us down and address things sequentially, and in order of importance.

 

I would suggest that you do *not* save up a dozen things to hit your poor doctor with all at once. Try your very best to eliminate the "noise" from the conversation, "noise" being just regular symptoms or symptoms most likely due to some other illness you already know you have. For example, trying to bolster a scleroderma diagnosis with calluses or cysts just won't work, and the effort itself will probably cause the entire thing to backfire.  So you have been very wise to bring up the topics here, get them discussed in the light of day, and to see if they hold "scleroderma water" or not.

 

But, if you get the Raynaud's nailed down scientifically, and add that to the carpal tunnel and the anti-centromere antibodies and then ask for a referral to a scleroderma expert, then you might have a working plan to at least get evaluated for possible scleroderma by an expert.

 

: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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Hi Msjess,

 

I just read over my last message to you, and I am sorry if I sounded so stern. Or bossy, or whatever.  The internet is awful as how we write things, and what it conveys to the reader, can be so different depending on the tone of voice we read it with, or so many other variables. I was saying it kindly, if that's any comfort at all.

 

Please bear in mind that we have to answer not only people's questions on the forums, but also the questions of people who are merely reading the forums.  Some of those people really are dyed in the wool hypochondriacs -- or cyberchondriacs, in this new day and age when most of us have not yet figured out how to sort the wheat from the chaff with the overwhelming amount of medical info available online.  And some of them have scleroderma, or other serious symptoms, but don't know how to navigate the health system when dealing with a complex disease.

 

And some of them are a mix of everything!  Some potentially serioius symptoms of potentially serious diseases but with a bit of cyberchondria thrown in, or just inexperience in working with doctors to get an accurate diagnosis.

 

As it happens, I think you have some potentially serious symptoms and it is concerning to also have anticentromere antibodies along with them.  In your particular case, I do not want your medical care to be disrupted, or steered off course, due to focusing on things that are most likely not related to scleroderma.  That is NOT to say that you should not have asked the questions, rather that you were very wise to raise the questions here and kick them about before faced with discussing things with your doctor.

 

Another issue is, we are taking your word for it that what you have are calluses on your hands. If we are all wrong about that -- which is certainly always possible -- it would definitely be an additional issue for your doctor.  So please never take anything we say as any indication to not bring an item of concern to you up to your doctor.  Just do your best to try to keep the focus on priority items that will help move your medical care forward, and that will help answer the question as to whether or not there is an underlying disease process at work.  That is not in the least bit easy when there is a handful of things going on at once!

 

: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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It's all good. I understand Shelley.

 

The main concern I have at this time is that ANA and subsequent testing, which showed my anticentromere antibodies at 123 (I dug out the papers today; the range was 0-100), and whether these antibodies show in persons who do not have CREST. If they do, then I am happy to have that mystery resolved and I can worry about my two boys and their health instead of mine, ha. I am just still mystified at the whole ANA/antibodies testing and there are still concerns on my part as to whether I have lupus. Before that testing, I was just fine dealing with my myriad of bizarre health problems as they each appeared, but if some of them are part of a constellation that identifies a definite disease process going on, then I want to be aware of it and be proactive so that I can be around as long as possible. :)

 

Again, thank you for your advice. It is helpful to be able to come here and learn a bit more about this autoimmune illness.

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Ah msjess,

 

I really feel for you as I have been there and am there again with complications of scleroderma and an overload of information. Prioritizing is a very important thing for me, and time management as well. Otherwise I could spend every waking hour on my illness. If I believed everything I read on the internet I would have died about 7 times by now and years ago.

 

I just had my autoimmune panels run again and I was certain they would show I had a bunch of diseases besides scleroderma. My ANA was exactly the same as 9 years ago only this time instead of speckled it read 1:180 diffuse. I am just plain old, full blown, diffuse scleroderma with everything that comes along with the package. Who could ask for anything more?

 

Of course you are worried and concerned, especially with two children. This is the best advice I can give:

 

1. Document your symptoms with notes that include dates and even photos of things that may change or disappear like the callouses, cyst, spots, etc.

2. Keep copies of all tests, labs, doctor notes, disks in whatever way best works for you. If a doctor says she thinks it is a certain thing, politely ask if there is a definitive test, or if you should see another doctor regarding it, and if so, ask for a referral if you need one.

3. Don't believe everything you read on the internet.

 

 

I thought I had carpal tunnel syndrome as well. My initial symptom was waking in the middle of the night with my hands tingling and my arms hurting. As my symptoms worsened with my skin hardening almost immediately I went from doctor to doctor to doctor, initially thinking I picked up a parasite in a foreign country. I put my symptoms into a search engine and scleroderma continued to come up. I had two of the doctors I saw suggest scleroderma but my primary didn't think that was it and not one doctor requested an ANA panel. A neurologist was going to do some labs so I asked her if she could run an ANA and she was great and did. Within a short amount of time I was officially diagnosed, something that is done by symptoms, not the ANA which just confirms it, and off to see a scleroderma specialist.

 

I wish you the best, I know where you are at and how very frustrating it is. Please continue to return to this great forum to learn and share.

 

miocean


ISN Artist

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Thank you miocean for your reply. I am going to attempt to post a couple photos of a few "symptoms." I've actually added them to an album on here, at this link.

 

MSJESS Photos

 

I have since noticed bumps, small bumps on my hands, some toward the bottom of my fingernail, and some on the inside of my finger towards the base. My hands and feet lately are insanely itchy, and I do wonder if this is part of a dermatitis that may be new for me. I also seem to get really itchy after sun exposure in general.

 

I've been to my doctor but haven't brought up my concerns again - I really don't want to have to go back to the first rheumatologist I saw last year, as he was just incredibly rude. But, if this keeps up, I will push to have all my ANA test repeated for peace of mind.

 

I really don't know if I should pursue this or the possibility that I have lupus again with the doctors. I'm just overall really frustrated by them all, and their lack of knowledge about autoimmunity.

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Oh, and another thing, I've recently dug up a few photos of my grandmother on my father's side. She had Crohn's disease, and from what I remember it's likely she had either CREST or scleroderma. Her hands became incredibly taut and shiny and she was eventually unable to knit any more. Also, she had many issues with skin thickening and her feet. I will try to add a photo to that album if I can scan it.

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Hi Msjess,

 

Thanks for submitting your photos.

 

I think that a lot of rheumatologists don't always have the knowledge about autoimmune problems, which is why if possible we do recommend that you consult a Scleroderma specialist., especially as you have had very little help from the first rheumatologist you saw.

 

I've included a link for you to our medical page on Causes of Scleroderma: Genetics which, in view of your grandmother's health problems, I'm hoping you'll find interesting and informative.

 

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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