Hi everyone! My name is Zac and I'm from New Jersey, just across the river from Philadelphia. About 7 years ago I was at an appointment with my PCP for something routine. He asked what my dermatologist said about all my spots. I looked at him laughingly said, "What dermatologist?" Thus began my masto journey.

Without boring you with the diagnosis details, I'll just say that I fully sympathize with all your pain and frustration in finding out about this condition. Since I was diagnosed, my doctors have been, shall we say, less than informative. No specifics, no Rx recommendations, no answers. Every year I go in for an annual check with my dermatologist and my hematologist, and every year I leave knowing just as little as when I went in. I've even visited with a supposed specialist at NYU who didn't really tell me anything. This year, though, I decided to start educating myself. Everything I now know about mast cell disorders is due to my own research.

I believe that the my spots are UP. It might be TMEP, but I think they more closely resemble the pictures I've seen of urticaria pigmentosa. And they are legion. I'm pretty much covered from head (shaved my hair once to see) to toe. The title of this post is a direct quote of a little girl who saw me laying on the beach one day. Until recently, the spots (and their complications) were my only symptom.

Over the past year, though, I've realized that my chronic heartburn and digestion issues may be related to the masto and may indicate that I am, indeed, systemic. I also have a new, weird thing going on with my fingertips: the skin around the nail hardens, cracks, peels away, and the nail starts detaching from the front. This new thing popped up in the last 3 weeks and my PCP thinks it might have to do with the masto. It almost looks like systemic scleroderma (sclerosis). Anyone else experience this?

My annual appointment with my hematologist is later this month, and I've compiled a checklist of questions. I'm taking over my own care, and the feeling of control is helping me deal.

I've recently begun taking an antihistamine (levocetirizine 5mg) and Aciphex (20mg) for the GERD. The Aciphex is amazing. Since starting it, I haven't had a single acid attack. If only it didn't cost $260/month. The antihistamine is a mixed bag. At first, I didn't think it was doing anything. I realized it was when I needed to stop it for about a week. Within 48 hours it seemed that every spot on my body started itching at the same time. For 3 days the itchiness was nearly unbearable. I'm about to go back on it as I'm done the round of meds that required me to take a break, so hopefully I won't have that experience again.

So anyway, glad to see there are others out there who are dealing with the same things I am. I'll be cruising around the threads for a while so I can familiarize myself with all of you. Thanks for listening.

Zac

Hi Zac,

Welcome to the group!

Aciphex is just an H2 antihistamine.  My husband has a hiatal hernia and takes it sometimes when he has a flare in excess acid.  Are you particularly sensitive to medications?  If not, you should be able to switch to a MUCH less expensive H2 anthistamine.  I take generic Zantac (ranitidine)... 190 tablets for $9 at Sam's Club.  Another H2 is Pepcid (famotidine).  These are very safe to experiment with and very cheap if you buy them in bulk OTC.  You don't need a Rx.

Heather

Uggh. Just spoke to my hematologist. He wants me to have a bmb. I knew it was inevitable, but now that it's definitely going to happen, I feel like I haven't prepped myself enough. Can anyone give me some expectations?

Also, he wants me to have a bone density test. I know I've read about a link between masto and decreased bone density, but does anyone know why it occurs?

I have some BRAND NEW articles on the bones and masto.  If you want a copy of the article, please PM me with your email and I´ll gladly send it to you.

Lisa

So I've now had my bone-density scan and a bmb. I've got osteoporosis in my lumbar region and a mast-cell infiltration of 15% in my marrow. Just spent a while laughing with my wife about being a 31 year-old man with osteoporosis! The osteo doesn't worry me much. The T-score was -2.8, which (if I understand correctly) is just inside the range for osteoporosis vs. osteopenia. I should be able to deal with it sufficiently with supplements and diet.

The BMB results, on the other hand, worry my a bit. 15% seems high to me, but I can't find anything that gives me an idea of the severity this would indicate. I've got a follow-up with my hematologist to get these questions answered, but would welcome any insights from those of you with more experience.  My hemat. doesn't think the infiltration levels warrant any type of marrow suppression meds at this point. Any thoughts on that?

I'll be getting in touch with Akin & Castells' office this week to schedule an appointment. I can't wait to talk with a doctor who doesn't say, "You probably know more about this than I do." Not the reassurement I was looking for.

Thanks, Lisa. Just made an appt with my hemat. for tomorrow to discuss the implications of the results. I'm hoping to have a better idea of where I stand at that point. I've read elsewhere on the forum that SM is indicated by a bmb result of 25% or more, but I've also read that mast cell leukemia can be triggered by 20% infiltration. So confusing.  

One of tomorrow's discussions will be about coordinating with the Boston group. I simply can't get up there frequently, so I need them to teach my guys down here how to take care of me. On the plus side, however, my hematologist seems to finally be taking an interest in my case. The more I prod him, the more inquisitive he becomes. It's a good lesson in how taking charge of your own healthcare can have unexpected results (like getting your doctors invested in your cause).

Thanks, Joan. Words of encouragement are always welcome.

I, myself, doubt it's MCL. Other than the pruritis and occasional GERD, I feel fine on normal basis. I've got no other symptoms directly related to MCD. I've got a high tryptase levels and now the positive bmb and osteo. But, that's the problem when you're trying to diagnose yourself, isn't it? All the worst case scenarios are the first to jump out at you!

I'll check back in after I see my hemat. tomorrow. I'm kind of using this thread as a diary of sorts for my various visits and to keep track of when my meds change (as they are sure to do with the osteo).