Mast Cell Disorders Forum

Mast Cell Disorders Forum
http://mastcelldisorders.wallack.us/yabb/YaBB.pl Welcome! >> Introduce Yourself/Share Your Story >> Greetings from Melbourne, Australia http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1333682664 Message started by Adalinda on 04/05/12 at 16:24:24

Title: Greetings from Melbourne, Australia
Post by Adalinda on 04/05/12 at 16:24:24

Hi Forum members,

I am Donna, from Melbourne, Australia.

I am not sure I really fit here, the mast cell and allergy picture here just doesn't seem to be as advanced as in other countries.

My story began when I was 20, and I am now 50!

Doctors have not known what to do for me.

My symptoms have jumped around and moved to new levels over the years.

For many years I was treated for Rheumatoid Arthritis, but also with this had other symptoms such as night sweats, flu-like symptoms, sinusitus, gastric reflux, migraines and allergies to certain chemicals and foods.

My tests came back negative when GPs tested for raised ESR, rheumatoid factor etc, even though I was in pain throughout my whole body and had red swollen joints.

My most recent symptoms include giant hives (I mean the size of dinner plates!, if I carry a basket over my arm or even sit too long), sinusitis and now asthma. I appear to be allergic to my workplace, I am a Librarian and dust and mould are setting me off.

I was exposed to a large amount of a cleaning product at work last week and felt like I had been hit by a bus.

One allergist said I had 'mast cell instability', that was about 9 years ago. He gave me Ketotifen which I had to import from New Zealand, but it made me very depressed. Since then I have scraped along by avoiding things with little medical help, but now that allergist has retired, just when my body is reacting to everything with a vengeance again.

Since my original research years ago I am back researching on the net and am amazed to see mast cell disorders described which seem to show people with my weird symptoms and triggers, including exercise, sunlight, stress, some foods, some chemicals, mould, dust.

I get confused mentally and agitated when I am hit by symptoms, a recent allergist I saw said that was rubbish, but others describe this symptom. I write the Dewey decimal numbers down all wrong when I am ill, not a good thing for a librarian!!

I am not taking any regular medication, only zyrtec when I have hives, through your forum I saw a post about specialists in Australia and I am going to ask my GP to refer me to the Alfred Hospital Allergy Center.

It is kind of exhilarating to finally perhaps put a name to what has been happening to me. Other people describe these strange symptoms and triggers and GPs don't seem able to deal it.

My children have had a few allergy problems, so I would really like to learn more in order to help them as they go through life.

Hope anyone reading this is a having a 'good' day,

Donna

Title: Re: Greetings from Melbourne, Australia
Post by ruth on 04/05/12 at 18:26:54

Welcome Donna, I am also from Melbourne but I am not living there at the moment. If you can get that referral to the hematologist at the Alfred you should be on the right track. Our GP in Ashburton was quite familiar with the idea of an activation disorder, and would have prescribed the typical medication regime described by people here, and would have referred my son on to a specialist - however we were only there in transit so couldn't follow through with him. I do think the knowledge is there but like in any country it is not widespread. If you are in the Eastern suburbs and would like my GP details send me a PM.

Ruth

Title: Re: Greetings from Melbourne, Australia
Post by Joan on 04/05/12 at 19:20:39

Hi Donna and welcome to the forum!

Many of us have waited a long time for a diagnosis. A few years ago a doctor told me that the AVERAGE time from onset to diagnosis for mast cell disorders is 9 years! Mine was 16 yrs, and others were longer.

These are such rare conditions that many allergists just don't understand it. Be sure to read everything you can and educate yourself about MCAD before you go to see the hematologist. Some people talk with their doctors about starting to take antihistamines daily, even before their diagnosis. Part of the diagnostic criteria can be whether your condition responds to H1 and H2 antihistamines.

Title: Re: Greetings from Melbourne, Australia
Post by Riverwn on 04/09/12 at 06:06:25

Title: Re: Greetings from Melbourne, Australia
Post by Riverwn on 04/09/12 at 06:09:32

Hi Donna!
I just wanted to chime in and welcome you here :) Im so glad Ruth posted to you and there are other people here from Australia that will probably post to you.

There is a huge wealth of knowledge here for you to dig into and study. Take a look at the LOW HISTAMINE DIET, study which triggers affect most of us, start keeping your "masto" diary of what you eat, what activity level you have,m which meds you take and what symptoms you have when reacting--day by day.

Most of all I just wanted to welcome you here and let you know from now on you arent alone!
Hugs, Ramona