The Lupus Forum banner

1 - 7 of 7 Posts

·
Registered
Joined
·
35 Posts
Discussion Starter · #1 ·
Hi everyone

I found this site by chance yesterday and I am sooo glad that I did. Its nice to talk to other people in the same or similar boat. So until then I actually had never spoken to anyone else with lupus. Anyway if you can be bothered I have written a bit of an intro as its been a long road to this point (I kinda rambled a bit). I look forward to chatting to you all and hearing your stories, learning from you, and just being an understanding ear when required :)

BTW I am a terrible speller :p

My name is Michelle (i prefer Shell) I live on the Mornington Peninsula which is about 1 hour from Melbourne. I am 26 years old, I am married with a 9 year old & 5 year old. I was diagnosed with SLE and Fibromyalgia about 8 months ago, but spent about 10 years looking for answers. I had 2 bowts of Glandular Fever when I was 11 & 12 years old and have never felt well for any length of time ever since.

Got tired of GP's doing the usual run of the mill tests that came back normal and then always thinking I was depressed, had Cronic Fatigue or some definatley thought I was just a hypocondriac and just wanted someone to give me pills. :wacko:

So I just started going to GP's for one complaint at a time to try to avoid that 'LOOK' However they would remember me from last week and I would get it anyway.
Ummmm dont they teach doctors about Lupus in med school????

It wasn't until a very good neuorologist ordered the ANA test when I nervously gave him the run down of my symptoms after discussing my persistant migraines. However even after getting a high positive result my referring GP just opened a text book to the most severe case of the butterfly rash I have seen so far and just simply said " you do not have lupus because you do not look like that."
I decided to look up what this Lupus was as I had never heard of it before. It all fit and I was determined to go and see another doctor therefore insisted that my GP refer me to a rheumatoligist.

Since then I have had all the tests and yes I have a diagnosis and no longer have to feel crazy as it seems Im just Loopy!

And if you could be bothered reading all my rambling I gather you must be loopy to. :rotfl: Therefore I hope to chat to you soon :)

Shell xo
 

·
Registered
Joined
·
13 Posts
G'day Shell...I am Patricia from QLD...nice to see another aussie...I have been diagnosed with Lupus for over 18 years..also have Fibro and RA...look forward to getting to know you more.

If you have any questions that you think I might be able to help with please feel free to ask :)
 

·
Registered
Joined
·
35 Posts
Discussion Starter · #3 ·
Hi Patricia

Nice to meet you :) I look forward to chatting with you, are you on the chat room very often? I like your website by the way :)

Kind Regards

Shell
 

·
Registered
Joined
·
150 Posts
good to meet ya

Hi Shell
sorry to hear about your problems in d/x. Good that you found a good neurologist.:lol: Actually I was in Melbourne, back Wednesday, to a clot specialist, and more specialists this month trying to improve on the 'lupus like symptoms' one specialist d/x, and put me onto Plaquenil. :wink2: Unfortunately we have no specialists where I live, so down to Brisbane for skin biopsy etc. The neurologist should be the next if I or new GP can find one down south.
Lovely to post to you both, I haven't spoken/emailed any other loopies in aussieland before- you're welcome, :rotfl: both of you.
 

·
Registered
Joined
·
35 Posts
Discussion Starter · #5 ·
Hi Mary

Thanks for the reply. Sorry to hear you have to travel so far to see specialists, that must play a toll on your body just getting to your appointments, when your sick its hard enough sometimes when they are only 15 minutes drive away. How are you with flying with blood clots? Do you have to take asprin before the flight or something?

I know that you are in QLD but if you or anyone else reading this post is interested here are the names of some fantastic specialists in Melbourne (Frankston)

Neurologist - Assoc Prof Ernest Butler

Rheumatologist - Dr Juan Aw

I regard them both as intelligent, thorough, informative, patient, approachable doctors. A+++ :)

If anyone can give me a name of a good GP in Melbourne South East I would much apprieciate it!

Good Luck and look forward to chatting soon :)

Shell
 

·
Registered
Joined
·
1,003 Posts
Hi shell

A big warm welcome to you!! :)

I am karen from the other side of the world in the uk :) I am 36 and have had lupus for nearly 15 years....I joined the forum about 8 months ago & I can't praise it enough!the members are so supportive & caring,:innocent: I dont know what I would do without them :)

I hope to meet you in chat soon & don't worry about being loopy shell because you will fit right in :lol:

bye for now
karen x
 

·
Registered
Joined
·
2,404 Posts
Hello Shell,

I am in the Uk. Please be assured that nothing like all Lupies present with a hideous rash, many girls here merely look a bit well and rosy cheeked.
Welcome here.
x lola
 
1 - 7 of 7 Posts
Top