Another Bad Visit
Posted 21 April 2007 - 12:57 AM
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.
Posted 21 April 2007 - 03:06 AM
Barbara aka relicmom1
Posted 21 April 2007 - 05:43 AM
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.
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.
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.
Posted 22 April 2007 - 12:27 PM
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.
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
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International Scleroderma Network (ISN)
Posted 24 April 2007 - 09:57 AM
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!