My ANA was negative.

My C-reactive protein in high, but not as high as yours is.

I don't know if I've had RNP-AB run, but a rheumy ran a bunch of tests for me, so if I've had that test, it was negative.

If I were you, I would consult someone else or do some research.  I am not totally trusting what you were told, unless he is feeling super confident that you are not displaying any symptoms that he looks for?

Starflower wrote on 05/18/14 at 16:21:11:


Hey Heather,

Thank you for responding so quickly. My allergist said I have Idiopathic MCAS. Wow, you sure had lots of blood drawn. I'd be on the floor with that much being taken.

My Rheumy said that he thought the ANA was was result of MCD, but then I heard that MCD is not autoimmune. Would you know of anything in writing about this?

Thanks!

My ANA has been elevated every time it was tested for decades now.  All of the rheumatologists have felt that it was indicative of something wrong with my immune system that wasn't yet showing up in other tests.  This was before I finally got the MCAS diagnosis.  (I also have Hashimoto's Thyroiditis.)

It looks like they didn't run a titration, so there's no way to know just how high it is, but unless it is very high, I would probably chalk it up to MCAS.

CRP is generally a measure of the level of inflammation you have going on in your body and as far as I know isn't indicative of any specific disease.  It is also associated with heart disease.  Mine, weirdly, has always been pretty low (maybe all the anti-inflammatories I take?)  From what I read on Wikipedia, anything under 10mg/L is normal; your rheumatologist might just have his system set to flag for lower levels.

I don't know enough about RNP ABs to offer an opinion.

I have an ANA of 1:320, HASHIMOTO'S and a positive ASST skin test, which is known autoimmune for Chronic URticaria (which I do not have any urticaria).   These tests have all been thrown at my MC disorder.  I've gone through extensive immunological testing and nothing more is revealed and thereby the doctors have said my masto has an autoimmune element.   It can open up possible treatment options but you've got to have doctors who feel that it's worth it and can understand it.  


I hope this helps!

Lisa

Quote:


It would have been part of the ANA results.  They either run just ANA  or ANA with reflex (which means if the ANA result is positive, they do further testing).  The reflex testing includes a titer to determine the approximate dilution ratio needed to dilute the sample to the point that the ANA show up at some minimal amount - which I can't remember.  The results are then reported as a ratio, for instance, Lisa's 1:320.  They keep doubling the amount of dilutant, so the next would be 1:640, though the number of ANA isn't necessarily twice as much, but somewhere between 1:320 and 1:640.  The higher the number, the higher your level of ANA.  I believe the reflex may also test for more specificity in the type of ANA.

PS:  Here is another question I have. I sent lab highlight reports to Dr. Castells last week along with a few questions. I also offered to pay her for her time.

I told her that I have MCAS and completed my first round of Xolair shots.

I heard back from Dr. Castells' office today, but I don't know what she means and I don't know for sure if it was from her or from a staff? Can anyone advise? I sent her lad reports, told her that I had MCAS and just had my first set of Xolair shots. I asked her if I should have any other tests done based upon results of my other tests. I separated and numbered the response for ease of reading and for feedback. Here is what I received a few minutes ago:

"1) Xolair should be of help and it takes 3-4 injections to have an impact on mast cell related symptoms and urticaria. You symptoms can be compatible with secondary MCAS , which would be treated with Xolair.
>>>> My question: I don't understand this response because I already told her that I am already diagnosed MCAS and already being treated with Xolair.  

2) We can review your slides and look for mast cell aggregates , CD25 abnormal staining and abnormal mast cell morphology. Dr Jason Hornick can review with us the nature and extent of mast cells infiltration from the GI.
>>>>>My question: Can anyone further clarify for me?

3) Kenisha will provide the specifics.
>>>>> My question: I guess I will hear more from one of her staff?

4) You may be a candidate for Plaquenil if your CRP is elevated or ANA is positive. "
>>>>> My question: Can't MCAS contribute toward an increase of CRP and positive ANA in some patients?

I've been anxiously waiting to hear from her and now feel a little disappointed because she didn't answer any of my questions. What do you all think? Thanks.

I have Autoimmune Chronic Urticaria and have had ANA results as high as 1:1280.  I've had all the mast cell disease symptoms at any given time.  My worst symptom is fatigue but that falls under my Dysautonomia diagnosis.  The only med I can tolerate is Zyrtec at night.  

Regarding Dr. Castells answers she was saying that yes you have an autoimmune mast cell disease and Xolair does help.

Also, I went to a new rheumotologist and I had a positive anti-DNA result for the 1st time since I've been sooo sick (lupus) marker.  I made him give me Plaquenil and I asked why he wouldn't just say I had lupus and his response was "You really have peaked my interest in your autoimmune mast cell disease and recommended a "specialist"
in mast cell disease about 45 minutes away.

I'm so glad to see Dr. Castells mentioned this med. in her response to you.  

If I find out anything interesting at my 7/1/14 appt. I'll post.