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Another Bad Visit

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#1 summer


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Posted 21 April 2007 - 12:57 AM

Well I went back to that dreaded Hospital in Melbourne where I had a bad experience the other week to see a "Scleroderma expert" (at my husbands insistence) for a 3rd opinion (and the last).

I saw an obnoxious loud female Scleroderma doctor who basically told me that I do probably have Limited Scleroderma as well as Fibromyalgia . She would not contemplate giving me any meds as I don't have diffuse, and that I would live to be a ripe old age without any organ involvement. She said that only 10% of patients diagnosed with Limited Scleroderma might get organ involvement and if they did it would probably be only PH.

She practically dismissed that I have had a High pulse rate for the last 4 weeks and basically told me that since I was the 3rd rheumatologist that I had seen for an opinion that it was all in my head and that I seemed an over anxious person.
I then told her that if I seemed a bit anxious it was probably because I was sick of been treated like a number, sick of being rushed in and out of doctors offices, and sick of doctors not listening to what I had to say.
She then "huffed and puffed and snorted and said that she doesn't believe in giving out meds unless I had diffuse.

I found that she didn't like to be questioned obout anything and she trivialised any other form of Scleroderma besides Diffuse.

When I asked her what she thought of Immunosuppressants and drugs like Plaquenil she said that Plaquenil would only be given to patients with Rheumatoid Arthritis, not Scleroderma patients, and definately not with Limited form!

I was glad to leave I know now that I will stick with the Rheums at Monash Hospital, they seem to be a lot more caring and compassionate and I have never been treated like a number and they are open to questions and not once objected to me to doing any research on the internet and asking questions when I see them. The only thing with them is they believe in wait, watch and see method before they give out any meds.

Anyway I just thought I would give you an update. Thanks for listening.

Celia :rolleyes:

#2 relicmom1


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Posted 21 April 2007 - 03:06 AM

I feel your pain. When I began this ride back in about 1999, I started with one joint on one finger that locked up. Xrays were normal, but at the time I worked for a general practitioner so he ordered the standard blood labs (ANA, RA,CBC,CHEM)The RA was neg and the ANA was sky high with a centromere pattern. Got sent to rheumatologist and was told I had sero-neg rheumatoid arthritis and was treated for that for almost one year, then one day (and he hadn't asked this before and I didn't know ;it was relevant) he asked if ;my fingers, etc turned white or blue and cold. Well, they have for ever since I could remember, even my tongue will!! He said, well then you have lupus not RA didn't change anything and sent me on my way. Well, I got frustrated and went to a new rheumatologist and he did a good thorough exam and told me I had CREST, explained what that C R E S T stood for and seemed to be more intune and more caring, but that as far as it went. I progressivley got more joint pain and swelling and extremity swelling, overwhelming fatigue and really thouth I ws going crazy. The GI things began to develop and got short of breath and just couldn't sleep. I went to a support group in this area and there was a guest speaker from Georgetown University Hospital who is a leading Sclero expert. Quite a few people there have been to see her and were very pleased, so I went to see her and was also dismissed as you were by your last bad visit. I do have organ involvement, but to her since I wasn't at the end of the ride it seemed she wasn't even going to try to help or explain. Needless to say, I left there angry and frustrated. There's a nurse practioner in my rheumatologist's office and I now see her by my choice, she listens, she explains and she does a much better exam when I go in. I go every three months, have labs every three months. My ANA to this day continues to be sky high (1:1680) and they do a C-Reactive protein that is also sky high (35), sed rate is high(can't remember this one) a couple of liver enzymes are creeping up and it seems I'm becoming diabetic ( I had gestational diabetes with my last child, so I've already beat the odds on this one!) YOu know, it is very disappointing when you go to a doctor who is suppose to be one of the leading researchers in this disease and you're treated like yu are wasting their time , time I must add that they charge an enormous fee for and either we or our insurance pays for. When I went to Georgetown, she didn't examine me or do any labs, she just looked at the records I brought and made her comments and decisions on those. Hang in there!!! The best revenge is continuing on in life as best you can, don't let this disease destroy your spirit :)
Peace :)
Barbara aka relicmom1

#3 Sweet


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Posted 21 April 2007 - 05:43 AM

Wow that is ridiculous! I get so sick of hearing about medical professionals being condescending with patients! It ticks me off!

I'm really sorry you had to even deal with this. Grrrrrrrrr

Man, can you tell this really bugs me?? I totally disagree with this arrogant doctor in terms of you not needing plaquenil. Get somebody to prescribe it for you. It will be the drug that helps you live to the ripe old age she mentioned. It has the ability to stop the disease in its tracks in many cases. There are many many people on plaquenil that have the limited form of sclero.

I'm so glad you stood up for yourself, that makes me smile!

Hang in there.
Warm and gentle hugs,

ISN Support Specialist
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#4 Heidi


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Posted 21 April 2007 - 05:58 AM


I agree with Sweet. I do hope you can find someone who will prescribe the Plaquenil for you as I am quite convinced it stopped the progression of my disease and helped so much with my fatigue. Maybe the rheumatologist at Monash will listen and try it with you. Please do keep us posted.

Warm wishes,

#5 nan


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Posted 22 April 2007 - 07:18 AM

I have CREST/limited scleroderma, Sjogren's, and Fibromyalgia and I am on plaquenil. In fact I have been on it since 2003 due to Sjogren's. This past summer when my rheumatologist here couldn't figure out what was wrong he told me I could go off plaquenil because my bloodwork was normal. I went off of it for a month and my hands and feet started swelling and the nailfold capillaries appeared with a vengeance. I went back on it after a month. When I finally got to Hopkins and got the CREST diagnosis the rheumatologist was pleased that I was already on plaquenil. Please try to find a doctor who will prescribe it for you.
Take Care!

#6 janey


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Posted 22 April 2007 - 12:27 PM

WOW - She sure didn't have a very good attitude! Of course after watching a movie yesterday that was based on a true story, I'm not surprised. It was about a medical student who was fighting the standard teaching of "the patient is a number or a disease" and was criticized by his instructors for referring to patients by name and for treating them like a friend! Your specialist obviously doesn't realize that this disease, limited or not, is different for everyone and you have to treat the person, not the disease. Of course that takes some real listening, which is hard for some people.

I'm so sorry that you had to go through this experience. It's good that you do have a n alternative to fall back on and that you have found one of those doctors that does listen and is more compassionate. They're out there. We just have to find them.

I hope you get some help with your next visit. Please keep us up on how you are doing.

Big Hugs,
Janey Willis
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#7 debonair susie

debonair susie

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Posted 24 April 2007 - 09:57 AM

Celia, I feel so bad for you... :( Sometimes, I wish we could just tie their legs behind their backs, I get so irritated when I read about this kind of thing happening <_< I've never been on the plaquenil either, but from what I've been reading (here), it must work well. I also have CREST limited sclero, yet none of my doctors (once diagnosed) have ever made me feel as though my diseases weren't of concern... to them.
Hang in there, stick to your guns and if you need to... copy these replies and take them with you to your next doctor visit!
Hugs, Susie
Special Hugs,

Susie Kraft
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