Haven't posted much lately . . .

mbeezie · Post by **mbeezie** » Wed Dec 30, 2009 6:06 pm

Hi Everyone,

Just wanted to say Happy New Year. I haven't posted much lately, although I lurk occasionally. I am quite certain that MC isn't my problem but I am eternally grateful for this site becasue it lead me to where I needed to go to get some answers.

It's been said on this forum that people wish they just had CD. Well, I wish I just had CD or even MC. Turns out I am probably looking at a mast cell disorder diagnosis, either mast cell activation disorder or systemic mastocytosis. I have an appointment with a hematologist/oncologist at MD Anderson on 1/5 and will have a complete workup, including bone marrow biopsy . . .really dreading that part. I've had a flare up recently of anaphylactoid reactions, to foods, smells and even an an episode on descent in an airplane 2 days ago. My D had stopped and I haven't had a problem for months but I am developing new symptoms so I know this is progressing. Over the summer I got brown spots all over my legs and they are consistent with Urticaria Pigmentosa, which is a sign of mastocytosis. I just thought I was getting old. My neuropathy and parasthesias have flared as well, even though I am vigilant about my diet.

I am somewhat freaked out about the thought of mastocytosis. It's a rare, myleoproliferative disorder - not enought known about it, but no known cure. I have visited the online support group for masto, but quite frankly, it was very depressing. I have taken to reading novels instead of hanging out there. I am trying to not get depressed until I know for sure but all of my symptoms point to this - every one of them.

Anyway, just wanted to explain my absence and to say thanks. You have all been wonderful and a wealth of information when I needed it. I will check in from time to time.

Have a healthy and happy new year!

Fondly,

Mary Beth

Gloria · Post by **Gloria** » Wed Dec 30, 2009 7:22 pm

I hope that your instincts are proven to be incorrect. You're too young to live with a major disorder. I wish you the best of luck.

Gloria

Post by **tex** » Wed Dec 30, 2009 7:38 pm

Hi Mary Beth,

Thanks for the update, but I wish the news were better. That appointment is right around the corner, and hopefully, it will provide the answers you need, for planning your next step.

You're certainly correct in saying that there's no point in worrying before you even get a diagnosis, but as we all know, that's easier said than done, so I definitely agree with you, that at this point, reading novels will probably be a lot more beneficial than hanging out at a depressing web site. I question the value of depressing web sites, anyway, since depression tends to generate more depression, while suppressing hope and inspiration. That's always counterproductive.

Happy New Year to you, too, and good luck at the appointment - and please keep us updated on how you're doing. Please don't forget that you're a member of the family here, and we care about you.

Tex

JLH · Post by **JLH** » Thu Dec 31, 2009 8:25 am

Happy New Year, Mary Beth. I hope you'll find your answers in 2010. Please let us know how your appointment at M.D. Anderson goes.

barbaranoela · Post by **barbaranoela** » Thu Dec 31, 2009 9:23 am

MaryBeth------and a Happy Healthier New Year to U---
Hold on to a good diagnosis---and know that we wish U the very best~~~

:bigbighug:

Barbara

ant · Post by **ant** » Thu Dec 31, 2009 10:46 am

Dear Mary Beth

Here's wishing you all the very best! Ant

angy · Post by **angy** » Fri Jan 01, 2010 3:19 am

Good luck with the appointment Mary beth and let's hope it's not as serious as thought... I also hope you will have your mind put at rest..

mbeezie · Post by **mbeezie** » Fri Jan 01, 2010 8:06 am

Thanks for all of your good wishes. I will keep you posted on the results of my tests.

Happy New Year!-

Mary Beth

PS: Here's a blog entry that I wrote yesterday - it helpes to journal

http://captassociates.com/blog1/2010/01/01/the-penny/