• Announcements

    • Joelf

      Upgraded Sclero Forums!   05/18/2017

      Welcome to the Upgraded and Redesigned Sclero Forums!!   Our Forums are even better and more up to date than before.   Happy Posting to all our Members!!
msjess

Update: Centromere negative now

7 posts in this topic

Just wanted to thank all of you for the support over the past months and to give a brief update. I have seen the new rheumatologist and he has agreed to take me on as a patient. He does feel there is something autoimmune going on with me, however all recent testing came up negative, including the anticentromere. I do have positive ANA still, and he has spoken to me about starting plaquenil. I am now in limbo waiting on a capsule endoscopy, which my gastro wants to run due to a question of crohn's disease (recent colonoscopy/upper endoscopy showed inflammation in ileum and duodenum). I also am waiting to hear back from my endocrinologist.

 

According to my online chart I have elevated alpha subunit levels, which possibly may indicate that I have a pituitary adenoma/tumor. As yet I haven't heard what steps we will take to deal with that, but interestingly one of the symptoms of a pituitary tumor/adenoma is joint pains.

 

I am curious whether any of you had scleroderma related antibodies show up, then disappear? I am wondering if that happens, wondering whether they may return or if that past test may have been a false positive.

 

Thank you again for all of your advice. I am sure I will continue to lurk here as the months go on and a diagnosis becomes clearer.

 

Take care.

Share this post


Link to post
Share on other sites

Hi Msjess,

 

Thanks so much for posting your update.

 

I'm very pleased that you're nearer getting a diagnosis and that you have found a rheumatologist in whom you can hopefully have confidence. I've never taken Plaquenil, but quite few of our members have found it successful and we have a recent thread about it. which you may find helpful.

 

I hope that the results from your endocrinologist are good and that any treatment you have for the possible pituitary adenoma/tumour is successful.

 

Interestingly, one of the questions I asked my consultants was about Scleroderma antibodies and whether I would have them for the rest of my life. I had assumed that they might behave like the antibodies that are produced after a vaccination and would therefore disappear after a certain amount of time (hence the need for regular vaccination) but I was told that as these are autoantibodies they would behave differently. I've included a link to the Definition of Antinuclear Antibodies which I hope you'll find interesting.

 

Please do continue to post and let us know how you're faring.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Hello Msjess

 

Autoantibodies and the like can change from negative to positive and back again over time or they can stay the same. Mine have always been the same...negative. Blood markers are useful to support findings but on their own should be taken with a pinch of salt in scleroderma!

 

Take care and keep posting.


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)

Share this post


Link to post
Share on other sites

Hi Msjess,

 

I've had antibodies appear and disappear and reappear and it is my understanding that is pretty common. Some of it, maybe even most of it, can be due to the different tests and labs that are used, and some labs are simply more reliable than others.  There are different types of assays used for tests, with widely varying degrees of reliability.

 

Plus like Amanda pointed out, it is possible to be negative for all blood markers yet still develop a severe case of scleroderma. Scleroderma is identified via blood work about 60 to 90 percent of the time, depending on the study. That is why it all goes back to clinical symptoms as being the most important for diagnosing scleroderma.

 

The whole pituitary adenoma thing is interesting, isn't it?  Unfortunately you can have a pituitary adenoma and still have scleroderma as well. And, there are false positives with that test, too. Unless you hear from your clinic very soon, you may have to take the initiative to set an appointment to discuss the results.

 

I know first hand how unnerving it is to have antibodies and then not have antibodies. It would be a blessing if a treatable and benign pituitary adenoma ends up accounting for everything and you are restored to health. But last year I had a very old parathyroid adenoma finally discovered and removed.  I got excited, hoping it was the cause of everything!  But it turned out that it only relieved some symptoms, not all of them as my surgeon had so hopefully enthused.

 

I have to say, though, that it was sure fun to get excited and to hope that I was about to be restored to perfect health!  So maybe I shouldn't have shared that story. But who knows?  It might be the entire cause and cure, and I do hope that for you.  In the meantime, though, until the air has cleared on this one, you will surely still need support.  So please continue to share your experiences with this with us, okay?

 

: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.

Share this post


Link to post
Share on other sites

Thanks everyone. How interesting that the autoantibodies appear and disappear and may appear again. I suppose I am up for a few re-checks in the future, as my new rheumatologist seems very committed to help me figure out what's at the root of my aches and pains. It seems that nobody ordered that test regarding the pituitary and it may have even been a mistake (written into my report by mistake?) so they are doing the test for me so that I can have peace of mind one way or another. Of course I hope it was an error, but with the headaches I am having now it makes me wonder...

 

Shelley, thank you for sharing that story, because I know how you feel! Last week I was reading about the adenomas (before hearing that those results may have been not even mine lol) and wow, with my TSH all over the place this year it made me wonder if that was causing a lot of the joint stuff and miscellaneous itchiness/heart palpitations etc. I am glad to hear your adenoma removal went smoothly and that it did help somewhat. If that is part of my issue too, at least it will be identified and taken care of right? I read that as many as 1 in 5 people will have had a pituitary adenoma in their lifetime! I had no clue it was so common.

 

Do any of you with raynaud's also get vascular headaches at the same time? I seem to be getting a lot of these one-sided (primarily left side) headaches and they are happening a lot when I am exposed to cold weather. Maybe it's a coincidence, but it makes me think that they are vascular in nature due to constriction of vessels, just like the issues in our hands and feet.

 

I will continue to pop up here, I am sure. And I will go read that info on plaquenil because that is still on the table at the moment. I just need to go through the hoop of a capsule endoscopy first, yay.

 

Take care all. And have a happy Thanksgiving to those of you in the US. :)

Share this post


Link to post
Share on other sites

Hi Msjess,

 

I do suffer with Raynaud's, but thankfully haven't had the vascular headaches. However, I have found a link on our pages from the Vascular Disease Foundation regarding Raynaud's which I hope you'll find interesting.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Hi Msjess,

It is very difficult to diagnose any of the autoimmune diseases. I was diagnosed with Scleroderma in 2004 despite none of the tests being positive except my ANA. 

 

My diagnosis was based on damage to the esophagus and reduced lung capacity. Luckily, my doctors took an aggressive plan and it was in remission in 4-5 years.

 

Best of luck to you.


Kind regards,

 

Kamlesh

 

 

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now