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What to tell/ask a new doctor?

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Hi all,

I am leaving for vacation tomorrow and when I get home have a visit with a new general practitioner. My husband has been to him and says this doctor is young and a very good listener. When he found out our youngest child is autistic he was very interested and asked my husband many questions about it.

My problems began almost 2 years ago with chest pains,shortness of breathe, high blood pressure and erratic heartbeat. As a 40 ish woman at her ideal body weight this seemed to come out of nowhere. In the hospital they did a catscan and saw what they thought was a tear or something in my aorta. After numerous tests and going in thru my leg and shooting me up with lots of that dye they said they couldn't find anything wrong. I don't know if my problems began before that or that triggered it. Soon after came weird things with my skin, hands and mouth. My mouth looks nothing like it used to 2 years ago, even though my husband refuses to see this!!!And it constantly feels weird, burning feeling wet...and hard to talk, my teeth are all starting to overlap and get crooked and major furrowing going on. My right hand is very difficult to move and on the inside the tendons have all thinkened and its geting harder and harder to open and close and do things. Skin on hands arms face very stiff and tight.

I have been to 3 dermatologists and a rhematologist. Biopsies of my skin came back as perivascular something or other but nonspecific. rheumatologist read the report and said it was vasculitis, dermi said no its perivascular. I really lost faith in the rheumatologist after he read the biopsy report wrong and also his seeing lack of desire to put any of my symptoms together...all my bloodwork was negative and he clearly will only diagnose via positive bloodwork or biopsy.

I really feel like I have some type of mixed connective tissue disorder going on...there are so many issues people have on this board that sounds exactly like me and more and more with each passing day. When I look at myself in the mirror most of all...I can't find any other disease that would so dramatically change ones mouth area in such short a time.

Right now what is also concerning me is I notice when I lie down, I can see my heart beating at my navel, really across my whole area down there. I know it didn't used to do this...so now I'm wondering if there really was something bad going on with my aorta 2 years ago.

Anyway I am going to ask for new bloodwork and would appreciate and comments or advice you all may have. Thanks so much! Eileen

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I'm so sorry to read about all the things you have going on and having to deal with doctors that provide conflicting information. I understand your frustration. I would recommend that you see another rheumatologist or better yet - scleroderma specialist. The link will help you find one in your are. A lot of us suffer from various types of vasculitis. Raynaud's is considered a peripheral vascular disease. "Vasculitis is a general term for a group of diseases that involve inflammation in blood vessels." ISN

Please keep pushing for a diagnosis, preferably one that your doctors can agree to. Keep an on-going list of symptoms and take it with you to each doctor's visit. Many doctors use the symptoms for diagnosis rather than just relying on bloodwork.

I hope you get some good information and help soon. Please keep us informed.

Big Hugs,

Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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I don't have your particular symptoms, but I do know the frustration of having a dr who has no clue nor the desire to find one. I saw 3 rheumos, 2 derms and 2 primaries before finding doctors who were as willing to keep seeking and testing to find a diagnosis. I knew something was wrong and keep looking until I found doctors who were willing to help. Don't give up.

I may have Scleroderma, but Scleroderma doesn't have me!

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