Help with finding a rheumatologist

[pgf54]

Hi , I live in country Wa and am moving to Perth next month. I am inclined to think I have sjorgens as I have in the space of three months gone from fit and jogging to a bit of a wreck. I have exceedingly dry mouth at night only, like something I have never felt before. Teeth dry tongue cracked, yet in the day no problems. I have dry eyes, peripheral neuropathy of both feet and raynaulds ...all developing this year , along with an attack of Bppv which put me in Hospital 5 days,,,,,,, My Drs don't know what to do with me, and I recently had all the relevant blood tests which were negative. I am so exhauseted if I try and do anything. I cant seem to get through to the Drs how I feel and how severe my dry mouth is, especially as its ok in the day, and my level of fatigue......

What a I am wondering if anyone can suggest a rheumatologist in Perth that wont just dismiss me because of the negative blood tests? I believe some do?

Any help much appreciated.

[Ozchick]

I can't help you as I'm on the East Coast but hopefully someone can help out. I'm on the Hughes UK forum because although that's my primary diagnosis I have some of the features (dry mouth -Yuk and dry eyes-not too bad) of this disease.

On the Hughes forum they have a list of specialists from all over the world (Though primarily in UK) and wonder if the Admin on this site would consider a similar list for Australian country and out of towers?

[Rigamorkus]

I am also from country W.A, I have primary Sjogrens syndrome, initially I had fatigue joint pain, weakness, trouble breathing and the Gp's had no idea, got treated for all sorts of things, including depression eventually the blood test showed I had Sjogrens. My G.P referred me to a specialist by the name of Dr Tafere Berhane he works in Perth but comes down to Mandurah on fridays, he prescribed medication that helped with most of the symptoms, I still get dry eyes, worse at night they wake me up every 3-4 hours and I have to put drops in, and dry mouth, like you, only at night. To help with this I use Biotene toothpaste , Biotene mouth wash and have Biotene mouth spray beside the bed with my eye drops. I don't know if you have sjogrens but I do know how bad it is to be sick and not know what is wrong, I hope you can find out soon and get treatment, good luck and I hope I was of some help.

[pgf54 in reply to Rigamorkus]

Thank you, you have been a huge help. Firstly I have been told its not possible to just have a dry mouth at night , so you are proof that it can happen ,,,,,,,,,I will get a referral to see Dr Berhane. I was told by the optician my eyes are extremely dry, and with my dry mouth, peripheral neuropathy and Raynaulds all happening this year it all seems to fit in...........

I still feel really quite ill if I try and exert myself, so will be good to find out whats going on....

[Rigamorkus]

Glad to have helped.

[caramello]

I do not know if this Reumatologist is still practising or just teaching. But he used to be in NSW and Brisbane and he ran the Singapore or Hongkong hospital. Now he is back in Australia but has gone to WA. In one of the big hospitals. He sees things very differently than the many Australian Doctors

He had picked up in 15 year old xrays that I had an inflamatory conditions prevalent in those times. He saw my skeletal bones a little whiter on the outer lining of the bones. he said it was a form of calcifying. And that It was not my bones that were causing me pain but the inflamation in my system the calcium formed along the bones as a form of protection. No one since has ever picked this up.

Any way his name is DR DAVID KANDIAH he is a director of Rheumatology in West Perth. You may be able to google, See if he still sees patients

I just wish he'd come back here.

I could not get any information if he ever gets back here at all in Nsw. If you ever get his surgeries address could you email it to me,

[Anna284]

pgf54

Have you been tested for SLE Lupus. You have all the symptoms. I've had dry eyes/mouth sore tongue etc many years, Raynauds, photosensitivity, fatigue and was dx MILD Lupus 5 years ago. Also have Discoid and have horrible skin now and rashes in scalp. The humidity triggers the rashes and difficult breathing! Great fun!? I thought I had the joint and muscle pains controlled by vitamins and minerals but still get flares. I'm not on any lupus medication. Only panadolosteo. Hope this helps!

[pgf54 in reply to Anna284]

Ana you may be spot on, i am having all manner of tests but so far my bloods show low vit D and low complement c3 and c4 which is apparently indicative of SLE. Also my echocardiograph shows some heart valve thickening damage which again can be caused by sle ,,,,,,,,,so it all seems to be pointing in that direction..Paul