I need more info on mast cell activation syndrome

I have a lot of symptoms which seem to point in the direction of mastocytosis or mast cell activation syndrome.

Does anyone have really good info on the symptoms, diagnostic testing, and on incidence of it in people with EDS?

Do any of you have this?

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17 replies. Join the discussion

start with www.prettyill.com Lots of good info there including the latest diagnostic criteria. Yes, there are more than a few of us with it.

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There's also a group of us who have EDS, mast cell issues and POTS discussing the three together at http://uk.groups.yahoo.com/group/theelephantproject/

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Hi Excellent info.

Many thanks!

Omega

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here is another blog on the topic:

http://forums.dinet.org/index.php?/topic/11405-mast-cell-activation/

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If you go back through a few topics you will find I posted two journal articles about Mast Cell Disorder as well. I couldn't email them to ednf.org as email address shown was not working.

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I have the latest proposed diagnostic criteria for MCAS. If you're interested in it, friend me, send me your email address, and I'll send you the pdf file.

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Hi Simplee, I have the latest protocol (under the video) here:
http://prettyill.com/videos/watch/the_laymans_version_the_driscoll_theory_s ection_2_mast_cells

If you poke around a bit, you'll find more info on mast cells, treatment, etc.
We have a forum at Prettyill.com with lots of great folks. tmsforacure.org is a great source of mast cell info, too.

I hope that helps. It can be life changing!
Big hug,
Diana

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Thanks everyone for all the references. Really good info.... you all know more than most of the Drs I have seen, and I have seen a LOT of Drs in my 68 yrs.

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Is mast cell the same as mastoiditis? Because it showed up on my brain MRI a couple years ago but I didn't know who to go for this.

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Did you look through the lists of specialists shown at http://www.ednf.org/index.php?option=com_sobi2&sobi2Task=search&Itemid=9999 9999

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Mastoiditis is an infection of the mastoid bone. (Different animal from mast cell disease). Did you get it taken care of?
:) Diana

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No, my general doc said if my ear doesn't hurt font worry about it. The neurologist at Chiari Institute said it needed attention but I don't remember what he told me to do. He left right after I saw him and never followed up with a letter like they usually do. I called and the girl said she would email him but I never heard back.

PLEASE HELP ME HELP MY SON :)
Did you get my email about my son I wrote on pretty ill ? Having trouble logging in there also.

Thanks so much,
Fran

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Hi Fran,
Can you tell me where you are having trouble getting on Prettyill? I meet with the web designer tomorrow. Are you having trouble getting the site to come up on your computer, having trouble subscribing, or having trouble logging into the forum? Did you get an email approving your pending application to the forum? Did you check your spam folder to see if it ended up there?

I want to help, but need to know where you're getting hung up. Thanks so much!
:) Diana

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It was logging onto the forum that I was having trouble. I tried to sign up a couple weeks ago but didn't get an email but tried to log on anyway. It kept saying wrong ID or password . Then I reset with one they sent me and changed but hadn't been able to get on again. I just re-did it again. Had a new password sent to me and changed it to what I would remember. Everything is working, Thank you. I sent an email from your forum, did you receive it? It was explaining what was going on with my son who lives in Nashville. I would really appreciate your thoughts on his situation.

Thank you again,
Fran

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Hi Fran, Well, at least logistics are figured out!
I'm about 150 emails behind... I'll dig for it, OK?
Hang in,
:) Diana

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Hi Dr. Diana,
Ugh, sorry you get soo many emails. I get lots but most are junk! Thanks so much for looking into this for me. I will wait patiently :) for your response.

Hope you have a pain free week!

Fran

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Hi Diana,
So much for my patiently waiting; instead I feel like I'm biting at the bit :(. To start from where I believe I left off in my email. He called me after his specialist appointment yesterday. He had know idea what kind of specialist it was but they are sending him to a neurological opthalmalogists at Vanderbilt in January. The specialist today said he believes Gary's problem is either from my stuff (Chiari?) or because he was three and one half weeks premature. He was brought into ICU when he was born and stayed for one week.

Waiting for your opinion, I believe you have my email? Feb1411@gmail.com

Thanks again,
Fran

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