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View Full Version : Please help - need a good lupus doctor in Perth, Western Australia



Creature
01-29-2010, 09:01 PM
Hello Everybody,

I have spent a long time reading this wonderful forum but haven't had the courage to post yet so here goes!

First of all my request, I really, really need a good doctor for Lupus in Perth, Western Australia. If anyone can help it would be most, most appreciated.

I have have hesitated a lot about posting but reading the understanding posts has really helped me. I th ink I have had Lupus all my life but because I have never had any visible symptoms or anything that appears on tests no one has ever diagnosed me so it is hard to post on a Lupus forum but I really, really think I do have it.

Just recently three GPs have told me they think I have Lupus but the immunologist they referred me to refused to even consider it because of my negative ANA result. My ANA has been negative three times but I still think I have Lupus as nothing else explains my symptoms. I really feel like crying because I have been dealing with this for such a long time and I can't get any help.

As a child I had such extreme exhaustion and joint pains that I could not even walk from one room to the other. I used to have to hold on to the walls and sit down often just to get from the bedroom to the lounge. I have improved very much over the years and learnt how to deal with my condition and I am able to work three days a week now.

Here are the symptoms I have had or currently have and please tell me if it sounds like Lupus. Nothing else fits.

ITP
Joint pains my entire life
Hair loss - all the time and once I nearly lost all my hair
Nausea when I go out in the sun
Fainting spells
Muscle aches and constant extreme fatique
Raynauds Disease
Skin rashes and problems (though never a Malar rash)
Constant Chest Infections
Unexplained heart palpatations
Dizziness and loss of balance
Migraines with dizziness, neck pain, loss of vision and brain fog
Constant stomach problems, never more than one day without pain
Plueretic Chest Pain
Regular anemia
Vasculitis
Constant nausea - most of my life
Mouth Ulcers
Shortness of breath
Swollen Glands

There is more but those are the main problems.

I just want a diagnosis so people will believe me. It is so difficult when I can't do something (like recently I had to cut down from 4 to 3 days at work because it was making me so sick) and I cannot explain it to people.

So sick of it all. I just want a doctor who will help me.

Thank you so much anyone who even reads this post. Just to be able to write to people who understand makes me feel a thousand times better.

puzzled
01-30-2010, 06:35 AM
ARGHHH i hate ANA levels! No matter what the result doctors will always have an excuse. But the fact is you can have lupus without a positive ANA and you can have a positive ANA and not have Lupus. It's only part of many criteria for diagnosing Lupus. ANA levels also fluctuate. I have had mine tested many times and have had a negative result once but most of the times it is positive.

Have your doctors tested your ESR, CRP and complement levels? Have they tested for anti dsdna? smith antibody? I'm sure someone will correct me if i'm wrong but sometimes these can be elevated without being ANA positive.

In regards to meeting the criteria Pleurisy, thrombocytopenia, mouth ulcers all meet this criteria. Nausea after sun exposure could be due to photosensitivity another criteria. All the other symptoms such as fatigue, arthralgia's, myalgia's, Raynaud's is further evidence that this may be autoimmune/connective tissue related. You do not need to have the malar rash to get a diagnosis of lupus.

Rather than pushing for a diagnosis of Lupus though have you asked your GP (who as you said is suspicious of lupus) to at least commence/trial you on treatment. He may say no but it's worth a try. He could try steroids to see if you respond. Plaquenil is also used in lupus but it takes a few months to work. The most important thing is to push for treatment.

I would give the immunologist the flick and find yourself a great Rhumy. Often the best Rhumy's will have a long wait but it's worth it if you manage to find a good one.

Creature
01-30-2010, 08:29 AM
Thanks very much Tadpole. The doctor made me feel crazy for thinking I could have Lupus with a negative ANA. I have got a list of Rhuemys today and I will try and get my GP to refer me to one of them.
I definately think the immunologist is getting the flick :-)
I think I have only had the anti-dna test.
Thanks again for your help. Makes me feel much less alone.

joaney
01-30-2010, 05:01 PM
Hello
I'm from Melbourne so I can't really help you with finding a good doctor around the Perth area, however, if I were you, i'd go back to that G.P who "thinks you have lupus" and ask him for a referral to see a rheumatoligist, which is probably what he should have done to begin with. The wait for public is usually around 3 months, if you have private you could be seen within a few weeks. If you don't have private, you could always get a referral for a private rheumy, and just pay as you go. Medicare covers around 60% of what you pay, and in the meantime you can be on a waiting list for a public hospital. We have a great health care system here, use it to your advantage.
Hope you get some answers soon.
Joaney.

mountaindreamer
01-30-2010, 07:52 PM
Hi creature,

i am so sorry to hear of your obstacles...First, as others have advised, a Rheumatologist is the dr. you want to see, not immunologist. Also, if you don't get good vibes from the first rheumy, then do not hesitate to try another. There are many of us who have gone through more than one rheumy...but there are some good ones out there, though sometimes difficult to find.

I would recommend that you keep a daily diary of the symptoms that you are experiencing. I have found that a lot of my lupus treatment is simply treating the different symptoms as they come and go. There is not one magical medication that takes care of everything. I have a bag of meds that i keep on hand for occassional use to treat my symptoms. If you keep a daily diary, then the dr. will be able to put you on some of these medications.

Your symptoms certainly mimick those that come with lupus. However, SLE is a difficult disease to diagnose, and even a great rheumy can be reluctant to diagnose it. The medications for treatment are serious drugs, and you don't want to be taking them if they won't help you. So, keep believing in yourself, and keep trusting your instincts. Be your best advocate, learn all that you can, don't let anyone make you doubt your quest. You are on the search for "whatever is making you feel so bad".

Try to get plenty of rest, that is crucial. Also, try to reduce stress (although difficult to do). Protect yourself from the sun - i even get tired when under flourescent lighting for very long. And, by all means, keep in touch with us. You will never be judged here at whl, so do not hesitate to ask questions. We are here, and always ready to help.

Welcome to our family, I hope you feel better very soon.

Creature
02-01-2010, 01:22 AM
Thanks so much Joaney. Just a little question. Would you know a good Rhuemey in Melbourne? I;m in Melbourne fairly often as my Mum lives there.
Thanks again.

Creature
02-01-2010, 01:23 AM
Thanks Mountain Dreamer. Some great suggestions there. Gives me encouragement to keep going :-)

Saysusie
02-02-2010, 04:21 PM
Hi Creature;
Welcome to our family. I see that you've already been given some good information from some of our members and I hope that they were helpful to you. I am in total agreement with Tadpole about the ANA issue. It is very possible to have Lupus with a negative ANA (just as it is possible to have a positive ANA an not have Lupus). Also, as Tadpole mentioned, the ANA is only ONE of several tests ( those that she listed) that must be run in order to diagnose Lupus. The result of the ANA should not be used to dismiss or diagnose Lupus.
Here is a website about ANA-NEGATIVE LUPUS that perhaps you can print and take with you to the doctor.
http://lupus.about.com/od/glossary/g/DefANANeg.htm
Basically, if your ANA is negative and you are displaying symptoms of Lupus, the doctor is supposed to run tests to check the following - not simply dismiss the possibility:
1) High titer anti-double stranded DNA antibody
2) Anti-Sm (Smith) antibody
3) Biopsy-proven kidney disease
4) Biopsy-proven skin disease

Also, keeping a diary/journal of your symptoms is a very good idea as Mountaindreamer suggested and I also agree that you might consider asking for a referral to a rheumatologist.
In the meantime, please know that we truly understand what you are going through and we are here to help you as much as we can.

Peace and Blessings
Namaste
Saysusie

Creature
02-03-2010, 11:33 PM
Thanks so much Saysusie.
Sometimes those doctors make you think you are crazy!
This immunologist said that you can't count most of my symptoms - hair loss, raynauds, chest pains, ITP, heart palpatations etc because you can get those things from other diseases.
That made me really mad because he didn't even bother to try and work out what could have caused any of those problems but just said it can't be Lupus.
I've had all these problems investigated by other doctors as they came up and no cause could be found for any of them!
Arrrggghhhh.
Sorry, 31 years of frustration being vented here! :-(

Lisa18
06-03-2010, 08:44 PM
Hi
I am in Perth and recently diagnosed with Lupus (and Sarcoidosis). The rheumatologist I see has offices in Mt Lawley and Helena Valley - Dr Graeme Carroll. It's only early days for me (officially diagnosed mid last year) and it did take quite a while for the diagnoses. The ball started rolling in 2008 and after being told I had lymphoma I waited 7 weeks for a biopsy of the suspect tissue and it came back as Sarcoidosis. The Lung Spec couldn't relate some of my symptoms to the sarc though so my GP sent me to Dr Carroll.
Your symptoms sound like they were written about me, although my ANA is through the roof.
I hope you find some relief from your symptoms and good luck for the future. Stay positive and smile. A smile always makes you feel better!
By the way - I have spent over 20 years dealing with these symptoms and just getting on with it cause no doc could find a cause and I thought I was a hypochondriac. Hopefully you will come across a great GP and the ball will start rolling - I'd refer you to my GP but he upped and left in Jan to go back home interstate :-(

Linda From Australia
06-25-2010, 11:09 AM
Oh My Gosh - Creature ... Lisa 18 ... and myself all live in Perth. This is great news. I have to wait 2 months for my first appointment to see a Rheumatologist and an Opthomologist. I am still waiting for more tests to come back to find ould what else is wrong with me. My GP told me to contact a support group, are you aware of any in Perth?

justanangel
06-28-2010, 05:33 AM
Hello
I haven't posted for some time, but can be of some help here. I have had lupus for 20 years, and I currently live in Bunbury, before that in Karratha, both in Western Australia. I have had a lot to do with Dr Langlands, a Rheumatologist in Perth, he has a private practice in Midlands, but I see him through Sir Charles Gardiner Hospital, as I have been in that hospital 2 times in the past 3 years with pnuemonia caused by lupus. He is also a specialist that travels around the outback, I have had dealings with him in Karratha during his visits there. I have been with Dr Langlands for over 3 years, he is an older specialist, but I cannot fault him, he has feelings, and really listens to you. I cannot remember his first name at the moment, sorry.

Hope that helps.

Love Helen H

Angel Oliver
06-28-2010, 05:41 AM
HI Creature and so glad you found us.Im sorry you have all these symptoms and like myself who have many on your list also in the beginning my rheumi said i have Lupus.But after bloods came back negative its been an up hill struggle since.You have been given some great advice from many menbers here who will take you under their wing,so keep coming back,as they help me every day.Take one day at a time,as hard as this struggle is,in this day n age you have to fight n keep fighting and dont be intimidated by the doctors.The also are human and can make mistakes and miss things.Thats why i keep fighting on.Dont get me wrong some days i think i want to give up,but i know like many here one day i'll find out exactly what my diagnosis is as my symptoms point to Lupus too.
love n hugs
Amanda.xxxxxxxxxx

Linda From Australia
06-30-2010, 09:03 AM
Helen (justanangel) I am being referred to Dr Langlands, so it is pleasing to hear a positive report about a doctor. Do you still see him and where? I go to Bunbury sometimes to visit my 2 brothers and their families. Such a nice place to live and holiday.

AleeshaBailey
08-30-2014, 02:17 AM
Please remove post if inappropriate. I have just created a Facebook
Group called 'Lupus Support Western Australia' Just a place where
people suffering can express themselves and relate to each other. I
would love it if others would join the group
- I live in Kalgoorlie but my specialist comes from Perth

https://www.facebook.com/groups/752622068130088/

Saysusie
09-04-2014, 10:30 PM
Your post does not violate our rules. Therefore I will let it remain. Thank you for supplying a place where others can receive support for this disease.

Peace and Blessings
Namaste
Saysusie