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Help to find a good rheumatologist


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#1 Sharonvandee

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Posted 20 June 2008 - 09:27 PM

Hey

Been ages since I have posted on here, as I buried my head in the sand and tried to get on with life. My general practitioner, cardiologist and gastroenterologist all agreed early this year that I have mixed connective tissue disease and that they would treat the symptoms as they come up. My dentist 3 mths ago diagnosed severe sjorgren meaning all my teeth are deteriorating at a fast rate.I now struggle with speaking and swallowing on a daily basis along with daily raynauds attacks. I sit here crying because reality has hit this will get worse even if I fight it. I know that the time has come to see a good rheumatologist but my general practitioner says she knows no one decent enough to deal with me. So I am wonder if anyone see a rheumatologist that they would be willing to recomend so that I can let my general practitioner know and get a referral. Please if you could PM or email I would appreciate it. Melbourne of Canberra would be ok.

Thanks so much
Kindest Regards

Sharon

Diagnosis Scleroderma-crest, Scolliosis, Asthma, ILD, Plueral Fibrosis, GERD, Hiatus hernia, Anticardiolipin positive, ANA positive

a little bent and broken and almost beyond repair!

#2 jefa

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Posted 20 June 2008 - 09:50 PM

Hi, Sharon.

Nice to hear from you again. Sorry to hear about your mouth problems. It is frustrating trying to cope with all these changes, but we are here for you when it gets you down. On our page of Worldwide Scleroderma Specialists you will find a link to the Scleroderma Clinic in New South Wales. I hope this is some help to you. Hopefully some of your neighbours will jump in and offer you some suggestions for a good rheumatologist.
Warm wishes,
Jefa

Carrie Maddoux
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(Retired)ISN Sclero Forums UK Chat Host

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#3 barefut

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Posted 20 June 2008 - 11:40 PM

Hi Sharon~

So good to hear from you again but I am sorry it's because you are not doing well. Just wanted to say hang in there and keep us posted. We are here for you!

Keeping you in my thoughts.

#4 Clementine

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Posted 21 June 2008 - 02:00 AM

I have missed you Sharon. How is your family and your farm?

Please keep us informed on how you are doing and don't be a stranger. I hope you get a good rheumatologist. Your sclero could get worse but not necessarily. Just do what you are doing and grab it by the horns. I know how depressing it is, the dental part in particular. Have you tried mouthwash for the Sjogrens? Peanut also uses gentle toothpaste to help hers.
Good luck Sharon.
Love,
Tang

#5 Gidget

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Posted 21 June 2008 - 06:23 AM

Sharon,
I feel for you. I mean, you reach the point where you get sick of being sick. Hopefully, you will find a sclero specialist near you -- if not -- here is what I do -- I look for a Lupus expert that lists Research. What I do is I find a rheumatologist that I might be interested in and look up their credentials or description on the internet. Sometimes this is listed if they are associated with a Hospital so I can find the info on the hospital website, otherwise, there are other websites that will give this info. I then look to see what they specialized in and if they say that they are "Teaching" "Research" or whatever. I then try to find someone that specializes in Lupus as I can never find anyone local that specializes in sclero and I make sure that they are into "Research". I don't want someone doing Teaching -- I want Research as they will be the most uptodate on current practices. As I am living between 2 areas of the country, two of my best doctors specialize in Lupus and perform research in Lupus. They are terrific but they are the first to say that they are "not treating me as they are not sclero experts". So, I go to the sclero expert and get a recommendation for treatment, and then I trot off to one of these guys who will administer the treatment as they are local. Sometimes they make changes to the sclero experts course of treatment -- usually make it more aggressive which is what I want. This way, when I go on a drug or have some reaction, I have a local rheumatologist who is aware of my situation and can react rather than my sclero expert 500 miles away. Sorry for the long response but I have had good doctors and then some pretty crummy ones and so far, my technique has worked pretty well and I haven't had any crummy doctors recently. Good Luck. Gidget.

#6 Lucy

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Posted 21 June 2008 - 07:04 AM

Hi Sharon,
Here is how I work with a good rheumatologist. Where I live there is no Rhumatologist my town is too small. The closest was 4 and a half hours drive away, but a Scleroderma Expert is 8 hours drive away. So what I did was go to the Scleroderma Expert every 6 months my husband and I do the drive, but all the test, medications etc she gives the written orders to me and I take back to my primary physician which he fills all the prescriptions and orders all the tests. When ordering all the tests he puts copies go to my Sclero Doctor and copies go to him. It really works well for me because my primary care doctor is always aware of what is going on with me and he is always close and available. I recently reacted to the Gleevec drug which the Sclero Doctor put me on and ended up in the hospital - my Sclero Doctor actually called my local hospital and through my primary care doctor got involved in my treatment. They were giving me far too much steriods because they did not know/understand Sclero and that the kidney's have to be protected but when my rheumatologist called and got involved they all viewed her as the expert and did as she asked. So for me even though my Sclero Expert is an 8 hour drive away my "team" care has really worked and I beleive it was because my Primary Care doctor was kept so involved.
Lucy
Diffused Scleroderma
Diagnosed Dec/06
First Sympton Nov/05

#7 Sweet

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Posted 21 June 2008 - 07:08 AM

Hi Sharon,

It was really nice to see your face again!



I'm really sorry to hear you are having so many troubles. I was diagnoses with Sjogrens last year and so I can relate the dryness. My biggest worry is that my teeth will decay rapidly. I have beautiful teeth and would hate to lose them. My dentist gave me a special mouthwash and toothpaste in addition to moisturizing drops to use throughout the day. They are all made by Biotene. I'm not sure if you have that available to you in the land of Oz, but please check. He also said to constantly drink water, take it with me everywhere and to chew sugarless gum as much as possible, as it makes saliva and will help keep things moist.



Hope that helps, and again it was nice to see you!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#8 CraigR

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Posted 21 June 2008 - 11:21 AM

I agree about using Biotene products. Toothpaste and mouthwash. When I wake up in the night with a mouth like the Sahara, I usually swish around the mouthwash - it's much better than water, and helps with the feeling of inflammation. I also buy the little breath mints (In the jumbo quantity!) that come in the plastic containers, and keep them handy everywhere. They are great for encouraging saliva. I've even suggested to the Biotene company they manufacture a medicated version - but they suggested I try their gum. I don't care for gum chewing.

Have you had the Schimmer (sp?) test? They place a little slip of paper in your eye, and measure the length of the liquid on it. I think the numbers of 1-5 suggest possible Sjogren's. I was a 1.

I've had Sjogren's for about ten years - I'm told quite severe, but it doesn't seem to have effected my teeth. I'm 53 and never had a cavity. I went to the dentist a few weeks ago with a slight toothache. Thought I had my first cavity - but it turned out to be a cracked tooth and they did a root canal (not nearly as bad as I'd heard). So that's what it's like to have teeth drilled...

Great teeth seem hereditary in my family - though I'd gladly trade them for better health elsewhere!

Craig

#9 Sweet

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Posted 21 June 2008 - 11:56 AM

Craig, your statement about not having any problems with your teeth yet, was very encouraging to me, thanks!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#10 Sharonvandee

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Posted 22 June 2008 - 12:20 PM

Thanks so much for all the love and warm wishes.

Thanks for the replies with suggestion.

I tried the biotene product as recommended by my dentist but they caused other issues so at the moment I use pronamel twice daily, tooth mouse twice a day and after reflux episodes, which is way to often and special mouth wash and mouth spray. This has helped alot with the dentist saying the strength of my teeth has increased by 50 % yay. There is still alot of work and repair to do but she is slowly giving me back my smile.
Kindest Regards

Sharon

Diagnosis Scleroderma-crest, Scolliosis, Asthma, ILD, Plueral Fibrosis, GERD, Hiatus hernia, Anticardiolipin positive, ANA positive

a little bent and broken and almost beyond repair!