Mast Cell Disorders Forum - New to forum and intro

05/16/24 at 18:37:02

	Welcome, Guest. Please Login
	Visit YaBB today

Home

Help

Mast Cell Disorders Forum › Welcome! › Introduce Yourself/Share Your Story › New to forum and intro

‹ Previous Topic | Next Topic ›

Pages: 1

New to forum and intro (Read 1925 times)

Laurie

Rookie

Offline

I Love YaBB 2!
Posts: 5

New to forum and intro
08/12/11 at 09:05:34

Hi my name is Laurie, and I am new to the forum. I have SM diagnosed via BM bx as well as MDS. My oncologist spoke with Dr. Akin last week after another scary admit that landed me in the ICU after an anaphylactic reaction to platelets. He suggested I come to Boston and see him as well as a hem/Onc on staff. Could someone provide me with a valid email for Dr. Akin? I have already been treated with 2CDA, Vidaza, and Dacogen as well as all the normal meds I take on a daily basis for the SM- h1, h2 blockers as well as a leukotriene inhibitor. Gastrocrom and many of the other meds have been tried without much success. Now the question is which disease is causing the bigger problem and what course to we take next. Any info about contacting Dr. Akin dire toy would be helpful as I wasn't to mke sure I can coordinate schedules to see both specialists at during one visit. I live in Colorado with my 3 young boys and can't make multiple trips.

Thank you for letting me be part of the forum.

Best, Laurie

Laurie

Ft. Collins, CO

IP Logged

nevermiss Tutor Offline I Love YaBB 2! Posts: 26	Re: New to forum and intro Reply #1 - 08/12/11 at 09:52:29 His email is Removed by admin He is great.
Back to top	« Last Edit: 08/12/11 at 11:13:27 by DeborahW, Founder » IP Logged

DeborahW, Founder FOUNDER/ADMIN Offline Posts: 1224 USA	Re: New to forum and intro Reply #2 - 08/12/11 at 11:15:01 Sorry! I removed Dr. Akin's email to keep it off of a public forum, however I will private message it to you. Dr. Akin is fine with us providing his email, but he prefers that we don't publish it publicly.
Back to top	Feel well! DeborahW, founder IP Logged

ADork

Tutor

Offline

I Love YaBB 2!
Posts: 35
Castle Rock, Co

Re: New to forum and intro
Reply #3 - 08/20/11 at 05:31:20

Hi Laurie,

I am also in Colorado!.. and while I am having many masto symptoms, although not nearly as badly as many here, I am in the process of testing for diagnosis.

My potential dx is coming from my metabolic bone specialist.. My bones are off the density charts (very dense unfortunately does not mean strong) and my 24hr histamine is high. He's scheduled a bone biopsy for October (damn I hate waiting), but does not do marrow.

It was recommended to me to contact Dr. Castells in Boston, collegue of Dr. Akin. And we have a telephone consultation scheuduled in a few weeks.

I also contacted the local support for colorado on the Masto Society site and one of the kind folks recommended Dr. Dreskin, University of Colorado Hospital. Dr. Castells confirmed the recommendation stating that she knows him well and can work my case with him. So I have an initial appt set up Oct 10 (again..must be the jersey girl in me but I hate waiting).

I will send you a message with his contact info..although he was easy enough to find online... I can also send you Dr. Castells info if needed.. just let me know..

Hope it helps.. Cindy

Cindy

IP Logged

Pages: 1

‹ Previous Topic | Next Topic ›

« Home

‹ Board

Top of this page