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Dr. Not Listening

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#1 dana



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Posted 12 April 2007 - 04:14 AM

I'm sorry for all these questions, I know from reading posts here of you here in worse trouble than me, but don't know where else to turn. I'm sorry and I feel and send my best wishes for you all, I truly do.

The reason I'm here today is I'm finding the doctors intimidating. I was sent to another dermatologist in a larger city for what they are now calling what I have linear scleroderma. Also I'm still on methatrexate, pantoloc and a bunch of skin creams.

I have mentioned to them that my breathing problems are alot worse, but they don't have anything to say about it at all. In the last two months I've had to go to emergency three times because I can't breathe. They give me oxygen flovent and ventalin. I've also been on prednisone twice this year. This worries me I can't do things I used to, because I now I won't be able to breathe. One other thing is my hands, and nails, are changing. What I mean is there starting to curve in and out at the knuckle on a few, and the knuckle has gottin large on others. I've told them of this, and again do not really get paid attention to any of these things.

Anyway I'm just looking for others opinions on these things,because I don't know whether to just let things slide for now. Or should I stand up for myself on these issues. I go back to the dermatologist in Toronto in May 10 and to my dermatologist. at home in june.

Thank You

#2 scampie5


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Posted 12 April 2007 - 05:15 AM

Hi Dana, you really shouldn't be on methrotrexate if you have lung problems I have scleroderma both types I did go on methrotrexate but I had a bad reaction to it however he did say that if my breathiing got worse while on it I must stop and phone him your hand problem is another part of Scleroderma as well as being maybe rhumitiod Arthritis I think you should stand up for your self good Luck Lynn

#3 janey


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Posted 12 April 2007 - 05:28 AM

Sounds like you need to see a rheumatologist rather than a dermatologist. I'm certainly no doctor, but with the breathing problems and changes to your hands there may be more going on than just Linear scleroderma. You should never take a wait and see attitude with breathing problems. So my suggestion would be to see a rheumatologist and a pulmonary doctor. The reason why you're getting blown off by your dermatologist is probably because this isn't his area so he just doesn't want to deal with it. If your insurance requires a referral, then please ask him or your primary care physician for a referral.

Please keep us informed on how you are doing and PLEASE never hesitate to ask questions and just post for support. That's what we are here for.

Big, big hugs to you,
Janey Willis
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International Scleroderma Network (ISN)

#4 Shelley Ensz

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Posted 12 April 2007 - 05:30 AM

Hi Dana,

I'm sorry for the difficulties and confusion you are encountering with your medical care. I hope that it gets sorted out for you soon.

There might be some confusion over the various types of scleroderma and their typical symptoms. Are you seeing a scleroderma expert, who could help explain the different types and make sure of your diagnosis and treatment plan?

Please keep in mind that I am not a doctor, and that I have no medical training at all. It is my understanding that linear scleroderma does not cause the hands to harden and curl inward, the way that systemic scleroderma does. So, there might be something else going on with your hands, or your diagnosis might be wrong. Usually, doctors are able to easily distinguish between linear scleroderma and systemic scleroderma since the skin involvement is very different. But, sometimes they get it wrong and, very rarely, there are overlaps of one sort or another.

About 1/4 of people with linear may experience one or two symptoms outside of strictly skin involvement. But generally speaking ("generally" being the keyword!) the type of lung involvement that occurs with systemic scleroderma is without overt symptoms -- in the beginning stages -- such as shortness of breath severe enough to need an emergency room visit. For that, you may need a consultation with an allergist and/or pulmonologist; it sounds a bit like asthma, since that generally causes more sudden and severe breathing difficulties. Regardless of what is causing the trouble breating, it would be very important to have it properly diagnosed and treated.

Linear Scleroderma
Scleroderma Experts
Types of Scleroderma

I hope this information is a little helpful, although I suspect it will just add more confusion, right at the moment. Sorry about that! We are glad to have you here.

Warm Hugs,

Shelley Ensz
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International Scleroderma Network (ISN)
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#5 Sweet


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Posted 12 April 2007 - 05:57 AM

Hi Dana,

In my opinion you need to see a rheumatologist. The dermatologist doctor is only going to concentrate on his area of expertise and that's the skin. Even your primary care physician (primary care provider) can order Pulmonary Function Testings (PFT's) to see what the status of your lungs are. By all means STICK UP FOR YOURSELF. You are the one that will take the best care of yourself. After awhile you will find unfortunately that you will be your own best advocate and will be the one keeping the doctors in line with what should be done for testing and treatment for yourself. Sad but true. Keep them on their toes!
Warm and gentle hugs,

ISN Support Specialist
International Scleroderma Network (ISN)