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http://mastcelldisorders.wallack.us/yabb/YaBB.pl General Mast Cell Disorders Discussion >> General Mast Cell Disorder Discussion >> Skin biopsy ? http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1402322121 Message started by zippy890 on 06/09/14 at 02:55:21

Title: Skin biopsy ?
Post by zippy890 on 06/09/14 at 02:55:21

Listmates,

I find myself in need of more information about my case. I was wondering about the information revealed in a skin biopsy, say vs a bone marrow biopsy ? I would be much more willing to submit (and pay for) and skin biopsy, than the BMB. But will I get any useful information out of a skin biopsy ?

Any thoughts on this from the brain trust here ?

Thanks in advance,
Todd in Tenn.

Title: Re: Skin biopsy ?
Post by KatFromMD on 06/09/14 at 05:19:23

You would only do a skin biopsy if you have a hive/lesion that they thought was mast cell related, such as in urticaria pigmentosa. If that came back positive, it would tell you that your hives are mast cell related, and that is it.

If you have a BMB and it is positive, it tells you that you have the form of mastocytosis that not only has overly active mast cells, but that also produces an excessive number of them, so that every time you react, your body dumps even more mediators in your system than a "normal" person. (This excess of mast cells was how they originally defined mastocytosis.) They generally say it isn't worth doing the BMB unless you have a baseline tryptase that is elevated. If your baseline tryptase is normal, it is unlikely that you have more than the standard number of mast cells. In that case, you just have overly-sensitive mast cells.

I've also been told that the treatment is the same regardless of the BMB outcome, so the main reason to do it is to confirm the diagnosis if other test results have been negative or equivocal. I suppose it may also help with insurance coverage in cases where the carrier will recognize classic mastocytosis (assuming you have it) but not the broader definition of mast cell disease.

Hope that helps some.

Title: Re: Skin biopsy ?
Post by texan1960 on 06/09/14 at 06:31:13

I agree w Kat. Dr. S went back and checked some skin biopsies my derm did. But, that was because they were odd pigmented itchy spots. If your derm has biopsies may be able to go back and check them. They keep them a little while.

Title: Re: Skin biopsy ?
Post by zippy890 on 06/13/14 at 07:27:07

Thank you. That definitely helps. My tyrptase was not elevated. I keep wandering around in no-man's land. I don't know how much longer I am going to put up with this. My doctor has definitely suggested a bone marrow biopsy as the next step.

You guys are the best. :)

Thank you,
Todd in Tenn.

Title: Re: Skin biopsy ?
Post by Susan on 06/23/14 at 16:51:53

Hi Zippy,

This may be too late to help. I have had both a skin biopsy of a suspicious lesion and a bone marrow biopsy. Neither were positive for mastocytosis, though I wonder if the skin biopsy had the proper stains. My mastocytosis was verified by a GI biopsy. It makes sense, as the gut was where I was having the most symptoms. I understand that some people have multiple bone marrow biopsies before they show a positive for masto. This is because the increased levels of mast cells are not evenly distributed throughout the bone marrow, so it is hit or miss whether they will pull a section that shows signs of mast cell elevation.

The same is true with the GI biopsy. The increased numbers of mast cells do not necessarily show to the naked eye, so the doctor has to take multiple biopsies to have the best chance of hitting an area that is abnormal. They also have to be sure to use the proper stains. Dr. Afrin seems to be very involved in doing GI biopsies, and there is info on this board as to his recommendations.

My bone marrow biopsy was very easy, and there was only a moment of pain that was quite tolerable. In fact, it was easier than the GI biopsies, with all the prep they require. So I am not necessarily saying not to do the bone marrow tests. Just that it may or may not give you the info you are hoping for.

Are you having any improvements from the antihistamines or mast cell inhibitors?