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http://mastcelldisorders.wallack.us/yabb/YaBB.pl General Mast Cell Disorders Discussion >> General Mast Cell Disorder Discussion >> Getting ready to see Dr. Chin on Monday http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1374618098 Message started by brigitte on 07/23/13 at 11:21:38

Title: Getting ready to see Dr. Chin on Monday
Post by brigitte on 07/23/13 at 11:21:38

Hello everyone! So Dr. Chin had me do some tests prior to coming down. I get some of them back today. Just wanted to share to see if this means anything to anyone.
Westergren sed rate high at 31 (normal range 0-21)
C reactive protein high at 1.76 (normal 0-0.75)
Complement tot. CH50 high 169 (normal 60-144)
Histamine plasma 8 (normal being 0-8)
Tryptase normal at 7 (normal range 0.4-10.9)
I am still waiting for my 24 hour urine test, and chromogranin A test which tested high 3 years ago.
Thanks!

Title: Re: Getting ready to see Dr. Chin on Monday
Post by brigitte on 07/28/13 at 12:54:21

So I'm down in Southern California! My appointment with Dr. Chin is tomorrow. I'm getting really nervous and anxious😁 I sure hope he has some suggestions for me. I just don't want it to be like when I went to Dr. Hallett at UC Davis. She spent about 5 minutes with me and told me to take more antihistamines. Grrrrr.....
BUT, I have noticed something while being here. I am always on the toilette (sorry) for the first half if every day. As Pam says, I have the big "D" like 10 times, then it usually calms down for the rest of the day with a few trips to the bathroom here and there. But since I've been down here I haven't had that. All I can think is that it's our water. We have a water softener dye to high levels of boron in our water. Is it just a coincidence? I noticed this same thing when we went to the Bahamas last fall. :-?

Title: Re: Getting ready to see Dr. Chin on Monday
Post by brigitte on 07/30/13 at 09:13:57

So I saw Dr. Chin yesterday. My histamine and tryptase were normal (which I knew, I knew we weren't looking at masto, but I guess he didn't know that) anyways, he said a normal histamine doesn't necessarily rule out MCAS because it can be difficult to catch the mast cells at the right time.
He said that my symptoms were that of a mast cell disorder, but that there was no evidence.
He left the exam room and came back with a totally different attitude after he saw some of my bloodwork (high complement levels, high c reactive protein and high chromogranin a) he said that my body was definitely reacting to "something". (He said in his notes that with the inflammation markers, something is going on and that it is not a psych issue. I must come off as a total wingnut! I don't know if I should be offended by that comment or glad he wrote it!)
Anyways, Normal range for chromogranin a on my labs is like 0-95 and mine was 139. But I have read that this test can be elevated from ppi's, which I do take Prilosec, so I'm not sure if this is why my chromogranin a is high or not. But it doesn't account for the other high inflammation markers.
So he said we are going to treat it as MCAS and see how it goes. But I'm confused. If I don't respond well to the meds, and it's not MCAS, than what is it? It's so frustrating and confusing. From what I've read and all my symptoms, it seems so obvious to be a mast cell problem.
He told me to continue with gastrocrom, and if it does not settle well with me, he gave a prescription for cromolyn without preservatives and a prescription for ketotifen. (Right now I have the cromolyn in the plastic viles. Do these contain preservatives?) What is the difference between cromolyn and ketotifen?
Thank you :)

Title: Re: Getting ready to see Dr. Chin on Monday
Post by brigitte on 07/31/13 at 17:00:16

I was just reading the Canadian mastocytosis site (thanks for the link Heather) and it recommends ketotifen over cromolyn because ketotifin targets the whole body while cromolyn focuses on the gut. I am currently taking the cromolyn, but have a written script for ketotifen. Wondering if I should just go for that. Any advice or thoughts?
Thanks! :)
Sorry for all the posts lately.