(Archived from deborahw - original forum)deborahw
Hello, hello! I think I "heard" my name mentioned! LOL. I am so sorry that I have been absent lately from participating on my own forum! (My little girl had an accident, so we have just been dealing with surgery, etc. Happily, she will heal up and be just fine!)
Anyway, I can take a few minutes now and welcome you both in the manner that you deserve!
It is such an amazing feeling once you have found the right mast cell disease specialist who can help you and turn your life around! So, we just need to help you both find that person! Jillian, it is nice that you have a doctor willing to help you, but we need to get you someone who really knows mast cell disease, because there are so many things that they can suggest to help you. If you bmb comes back negative, you could still have mast cell disease (like me, only it is called Mast Cell Activation Disorder by some and Idiopathic Anaphylaxis by other doctors). Also, depending on who did your bmb and where it was tested, it could actually come back with a false result. (I hate telling people that, but that is what I was told by Dr. Akin, who you probably know is a world renowned masto researcher.) Dr. Akin told me that there are only a few places in the US, that truly know how to test correctly for masto. Examples of these places are: Univ of Michigan (Dr. Akin's lab), NIH, & Mayo Clinic.
I can email Dr. Akin and ask him if he recommends anyone in your areas. Just to doublecheck: Laura -- you are in Southern California, and Jillian -- you are in Oregon. Correct? Anyone else need to me to ask about recommended doctors in a certain area? Let me know asap, and I will email Dr. Akin in the morning and see if he can help us out!
In the meantime, I would urge both of you, Laura and Jillian (and any other newcomers) to read the topics in my FAQ section if this forum to get you started in the right direction. We have so many helpful people here now, so if you keep reading, you will soak up all sorts of good tips and knowledge. That is the key secret to taking control of your illness and helping yourself get better -- educating yourself as much as you can and learning what your personal triggers are and how to handle/avoid/prevent them.
Welcome, again!
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Feel well!
Deborah
23 April 2009 09:40 PM