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From: Painful ulcers on fingers


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#1 Snowbird

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Posted 19 February 2008 - 12:53 PM

Hi Phyllis

Sorry to hear you are struggling so much right now. If it were me, I would ask my family doctor to refer me to another rheumatologist so that I could get a second opinion. Sometimes it takes more that one doctor to get to the root of problems, especially when they can be so entwined like these rare diseases. It sounds like you need someone that takes the time to explain things to you (we all want and need that when dealing with any type of news like this, let's face it, it can be very scarey)?

I think I'm not understanding part of your message though. It said below that you have scleroderma (have you actually been diagnosed with it or do you believe you have it although the doctor's did not confirm it yet)? I have absolutely no medical background, but I ask this because digital ulcers can be a part of this disease from what I am learning (which could possibly fit in with your diagnosis if they have confirmed you have scleroderma)....just wondering if there was possibly any mixed communication from them to you because I imagine it could certainly add to your frustration/worry, if that's the case. I hope you get the answers you need soon. I think you will find people on this site very helpful, I know I do....I'm fairly new to this too.
Sending good wishes your way!

#2 gemini26

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Posted 19 February 2008 - 02:50 PM

Hi Snowbird. No, they keep saying I don't have the antibodies.....even though I know you can have scleroderma without the antibodies. I am so upset that I'm the only one who seems to be able to connect the dots and say everything I have is coming from the same disease. I am just so tired. My Rheumatogist makes me feel like it's all in my head. I can't stand this anymore. My fingers are killing me and my toes are constantly numb thr pain in my chest from the swallowing and spasms are driving me insance, but I must be making all of this up because I'm nuts. I don't know what to do. I plan on seeing an Auto Immune Specialist. Maybe they will help.

Thanks for caring, no one else does.

Phyllis

#3 Sherion

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Posted 19 February 2008 - 05:38 PM

Phyllis,

I care also!!!! I do believe you need to see a new doctor. The Auto Immune Specialist is a good idea, so is a rheumatologist that specializes in sclero. It's not all in your head and you DO need some positive answers. Hopefully you'll be able to get some help soon.

Sherion

#4 Snowbird

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Posted 20 February 2008 - 12:19 PM

Hey Gemini26

It's great if you can get into an autoimmune specialist...do you have an appointment already, I sure hope so?

I hope you also ask for another rheumatologist, like yesterday...they'll give you a list on this site...and great advice on some good ones in your area I'm sure...be sure tell us the area you live in (I think somebody was asking in the other path in hopes of helping you).

Please don't let these symptoms go any longer, sometimes we can't explain but we know in our hearts when something is really wrong with our bodies.......it's very important that you get a knowledgeable doctor to help you...and yes, we do care very much about you and each other! I hope you keep us updated.
Sending good wishes your way!