Big question Joy, but I'll try to make this short. LOL!
Technically no. At least not what is called Systemic Mastocytosis.
So that I don't repeat a LOT of explanation Joy I need you to go read my reply to Adele where I explained today the difference between the proliferative versus activation disease.
http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1300616439/14#14This explanation give to you an understanding as to what is clonal versus non-clonal and this is where the major issue lies.
About 20 years ago, before the clonal form was identified the disease was given one name, Mastocytosis. Before then they knew that there was Urticaria Pigmentosa and some other skin lessions that showed all of this but it took research to bring them all under one disease for those patients who don't show any skin lessions created problems for until they began to really look closely they didn't realize that this was all the same disorder. Yet, as research in to "masto" went on, they began to concentrate solely upon the clonal form, since this was the major physical proof that they really could study. So, in this process as they began to study the patients they would take those who had the proof of the clonal problem with their mast cells and put them into the pile and call them systemic mastocytosis. They didn't know then that the cutaneous patients would evolve into the systemic patients - or that the skin disease would go systemic. This they've found out within the last 10 years or so.
The problem with this is that as they began to define what comprised that of SM, they began to exclude anybody who didn't fall into this strict definition and a whole bunch of patients fell outside of this group. Yet, this was the problem, you had a bunch of patients who looked like, acted like and were treated like the SM patients and responded to that trreatment sucessfully, but who in truth were not because they didn't fulfill the strict criteria. WHY? And this is what forced the researchers begin to realize that they had made a mistake in considering that anybody outside of that criteria were not with some kind of form of the disease.
So, with this they recently decided to open up the diagnosis of the disorder so that it appears to now be Mast Cell Disorders, with those who fulfill the criteria for SM on one side of the spectrum. This put everybody else into the MCAD diagnosis, and we are waiting for the precise criteria for this diagnosis to be published.
It is within this group of patients who are showing that there is an autoimmune element here.
For example, Heather and I and several others have positive autoimmune markers. WHY? We don't fulfill any other disease criteria with those markers, so what do they mean? It doesn't seem to be another disease for our disease clearly show's it's masto by either having some kind of positive mediator release or that of having some kind of positive pathological changes, thus reinforcing that it's masto. Where exactly the autoimmune markers come into this, nobody yet knows, Joy for there's not one researcher looking into this yet.
My case seems to be that of the MMAS patient which would mean that I have one foot in both camps, that of the clonal SM patient and also that of the MCAD non-clonal patient. Cases like mine may be the "missing link"cases which prove that there is actual autoimmune form of masto, but for now, it seems that there is a separation in that most cases seem like Heathers, truely non-clonal in nature and the autoimmune patient would be in that MCAD category. But again, until they begin to purposefully study the autoimmune patients and gain more understanding as to what these patients comprise as to their profile and their cause, they suspect it to be so, and they are even saying that it exists, but there is no profile which has been drawn and they don't understand the whys and why nots about it.
We autoimmune masto patients remain a mystery.
I hope this helps!
Lisa
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