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Australian Support Group? (Read 5551 times)
Adalinda
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Australian Support Group?
04/27/12 at 21:02:57
 
Hi Everyone,

Is there any way of forming a sub group of Australians with Mast Cell issues so we can pool what seems to our very few resources here?

I have seen a couple of posts from other Aussies, but all over the place and on separate issues.

Luckily I found the abbreviations which translate the tests and medicines for me from US to Australian!

I am new to this and I have not been diagnosed yet, except for an allergist who said I had 'mast cell instability' and prescribed ketotifen which made me very depressed (mind you this was whilst my divorce was happening so I was breaking out in huge hives over and over so a mess) It also cost me $130 to get one bottle from New Zealand and I was broke at the time so it was not easy.

I seem to have experienced most of the symptoms everyone else has described, except for anaphylaxis. There are also other things I never associated with this such as years of dizziness which I was told was a hangover from a virus, and tinnitus which did go away for no reason in particular.

I have never taken histamines continuously, except over the Xmas 2010 break, then I stopped and went back to my dust laden and mouldy workplace and it has all been downhill since. So perhaps they were working, but I was away from the bad triggers. I am happy to go back on them, but it is which ones and the dose I am unsure of.

So any advice on which histamines,  where to get meds cheaply, which are best in Australia, sympathetic specialists etc would be great.

At the moment I am making an appointment to see my GP and ask for the tests from this site and a referral to the Alfred Allergy Centre. Dr Andrew Wei is mentioned as being good.

Any advice appreciated,

Donna




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DeborahW, Founder
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Re: Australian Support Group?
Reply #1 - 04/30/12 at 05:31:23
 
Hello Donna. The weekend gets kind of quiet here, so you might get some responses today. I can't really start a thread just for Australia, as you would end up excluding some of our most knowledgeable people, and this is an international  forum. However, I could start threads for each country in regard to doctors or pharmacies as a quick reference guide when shopping around in that country. Smiley
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peter
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Re: Australian Support Group?
Reply #2 - 04/30/12 at 18:37:25
 
Hi donna mastocytosis face book aus is the only grupe
best of luck
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Adalinda
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Re: Australian Support Group?
Reply #3 - 05/09/12 at 00:59:14
 
Hi Deborah and Peter,

Thanks for your replies.

I had a bad weekend when I posted this.

We turned the heating on at work, it stirred up dust and I was really ill.

Deborah, I think your suggestion is what I meant. I am finding the site so big and I spend heaps of time wading through looking for things it is all a bit confusing, I did find some handy translations for blood tests, it is probably the names of drugs and good doctors that is most difficult for me.

Things might be better after my specialist appointment.

I think it is good that this is international as there lots of suggestions from all around the world, it is just the finer details such as good Doctors, names of meds and names of tests that are really specific.

Everyone seems to chat in a strange language of abbreviations which can be a bit confusing in the beginning. I did find some glossaries as I said.  Diet suggestions have been great, Triggers seem to be common to many. The emotional difficulties and the frustration with this seems to be universal!

Thanks again,

Donna

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DeborahW, Founder
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Re: Australian Support Group?
Reply #4 - 05/09/12 at 02:03:26
 
Donna,  I am so glad that you suggested this! I think it will be an excellent addition to the forum!! Now, I just have to find the time to sit down and add these things. I have a huge list of people just waiting for me to approve their forum membership. It is all so time consuming, but I will try to get it up soon!
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SHOMETHESPOONS
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Re: Australian Support Group?
Reply #5 - 05/09/12 at 03:31:41
 
Hi Adalinda,

I just joined the group and saw your post. I am in AUS. I still need to do an intro to the whole group but cannot do it until after my appt on Friday May 11th. Am about to PM you re Dr Wei. He has an excellent name and apparently very easy to get along with. He was one of the speakers at the recent Australian conference. Did you contact the Aussie Facebook site? As far as I know they are the only Masto group in Aus.  

Cheers
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