Egd And Mast Cell Activation Results

[juliegee]

Suzy,

I have put a request in to my Mastocytosis/MCAD group to recommend a doctor in AZ. I'm waiting for a reply. I've also had periods where I lose oodles of weight and become dangerously thin (following surgery or pain meds.) Now, I wouldn't mind losing 10lbs. Seems to be a part of MCAD for me. Stand by and I will find a good masto specialist for you.

Julie

[all4family]

ty ty ty ty Julie, that is so very kind of you. I can't even begin to tell you how much I appreciate it. The more positive blood tests I get the more confused I am. This is so nice of you.

When I lost weight I was on xanax. And I couldn't stop losing. I kept saying I think it is the drug. It took me a while after getting off it to balance out, then I gained overnight. Then another bout with medications, and the same thing overnight loss and after a while overnight gain. That is reasuring to me because I am worried about some type of GI cancer.

And I just want to say one more time....THANK YOU!

Suzy

Oh and I just wanted to say if it is even close to AZ we will travel.

[juliegee]

Hi Suzy,

Here are some of the responses I'm getting:

"I am in Arizona and see Dr. Isaacs in Phoenix. He is not a 'masto' doctor per se, but has treated me for several years and is a very well respected hematologist.

He came recommended by my internist, my dermatologist, a cancer researcher I know and my husband, who is a Radiologist who worked with him at the hospital

in Phx when we lived there.

I found him very proactive and interested in diagnosing, treating and investigating this disease. He has no problem picking up the phone and calling masto experts

back east for input.

His number if your friend is interested in calling and seeing if he would be right for her and is taking new clients is 602-494-6800.

BTW, several people told me to avoid the dr's at Mayo specifically. They have a poor reputation with masto patients."

____________________________________________

The following is a list the Masto folds have developed. No one is specifically standing by or recommending these doctors, but they might be great:

Dr. Richard Gilson

4515 S McClintock Dr. Suite 100

Tempe AZ

480-820-1133

Dr. Angelo Petropolis

1236 Fry Blvd

Sierra Vista AZ

520-458-1505

Dr. Laura Ispa (published paper on Mastocytosis)

Address

Phone

Dr. Henry Lee

Hematology

3330 N 2nd St

19841 N 27th Ave

Phoenix AZ

602-277-4860

__________________________________________________

I also know a woman who heads a support group for masto folks in AZ. I am waiting to hear from her for some good recommendations. I notice several of these recommendations are for hematologists (blood doctors.) May not be a bad idea as you have several unusual blood test results. I'll pass on more recommendations as I get them.

Hugs-

Julie

[all4family]

Hi Julie,

Thank you again. This is so nice of you to take your time to help me. I understand more about both pots, and MCAD from this site then from the doctors I have talked to.I would not have even asked for the test if not for the information on here. Do you need a referal to see these kinds of docs? I have a good ppo, as far as insurance I don't think I have to have a referal?

Anyways thanks so much. I will be calling, and seeing what I can do. First I have to get a copy of my paperwork from Mayo clinic.

hugs

Suzy

[juliegee]

Hi Suzy,

I am still waiting to hear from the AZ support group leader. I'm sure I will by tomorrow. I feel certain she will have some good masto docs to share with you.

I have a few questions for you, trying to understand where exactly you stand. Why were you having the EGD? Did you request it as a means to identify MCAD or rule out mastocytosis? Or, were you dealing with other gastro/esophogeal issues? There is a very special procedure/stain that has to be used to check for excessive mast cells in the GI tract. I'm certain that the docs at Mayo are equipped to do it....IF they knew what they were looking for.

Did your GI doc or neurologist suspect MCAD? or did you? Were you trying to convince them OR the other way around?

Have you ever gotten to the bottom of your abnormal ACHR.neurel.gangl.AB test? I guess a neurologist would help you figure that one out. Has the test been repeated or do you know WHY the result is abnormal?

Please forgive my terribly invasive questions and feel free to PM me if you don't want to answer here. Just from reading what I have about you, I suspect that you may have MCAD that is contributing to your orthostatic intolerance. I need to know where you stand in order to refer you to the best doc. I hear that Mayo/AZ is not[/i] helpful in recognizing MCAD, BUT if you had a doc there who did suspect it- maybe the tide is changing there and you should follow through with what they recomend.

If you do indeed have a mast cell disorder, it is no doubt contributing to your orthostatic intolerance. By identifying and treating it; you can get much better and be much safer when you have to do further diagnostic testing. There are ways to pre-medicate before X-rays, CT-scans, MRI's, procedures, surgeries that can help protect you.

I'll have some more good referrals for you, hopefully by tomorrow.

HUGS-

Julie

[all4family]

Hi Julie,

I don't mind answering questions at all. I just appreciate the help you are giving me. Going from thinking everything was in my head (although I didn't believe it in my heart) to everything is wrong with your blood, practically overnight has left me a lot of questions.

Ok...I was going to answer here to make it easier, but I was writing a novel, and thought it would be to long, so I will PM you.

Hugs

Suzy