I know this is long, but I just have to share my story --- I'm in a terrible state. Please, please, please, if anyone can read it and offer support, I need it as bad as ever right now. Thanks for listening.
These past few days, my anxiety has been THROUGH THE ROOF. I can't concentrate on anything except my fear of disease. In short, I'm worried that I have a rare kind of scleroderma (an already rare connective tissue disease). I've had this fear day in and out for the last 3 years, and it's at its peak right now.
Scleroderma literally means "hardening of the skin." Apparently, more than 95 percent of cases involve this symptom. Do I have skin hardening? No. But scleroderma can also affect internal organs. It can cause the muscles in the digestive tract to harden and slow down, leading to bloating and small intestine bacterial overgrowth. Two years ago, I tested positive for a bacterial overgrowth after years of chronic bloating. Scleroderma can also harden the lungs. Apparently many people with scleroderma show a low/abnormal "diffusion capacity" on pulmonary function tests. Great - just the part I scored abnormal on when I had pulmonary function tests back in 2004. Oh, and pretty much everyone w/ scleroderma also has Raynaud's, and I appear to have a mild case of that, although it's questionable because it is so mild.
Now, I should stress again, almost all people with scleroderma-related organ damage also have the skin symptoms characteristic of scleroderma, which I do not. But there is a very rare form of scleroderma that does not affect the skin --- just the insides. The incidence rate is around a handful of people per one million. So it would be like winning a really bad lottery.
There are no perfect tests for scleroderma. The test most likely to be positive is an ANA, which can be positive for any number of different reasons. I've had 3 ANA tests, most recently in late 2011. Each time, the results have been negative. I've also had inflammation levels checked, and they're always normal.
I went to my family doctor yesterday in a panic. She said that since I had a negative ANA seven years after my symptoms started, then I can be sure it's not scleroderma. She has had 3 patients with this disease, and she's worked with specialists at university hospitals to coordinate their treatment. My doc said that she was told that pretty much all cases have positive antibodies after around 3 years. But I've read such differing things online. Some sites say that 95% of scleroderma patients have a positive ANA. Many other sites say it's as low as 50 to 80 percent. So that leaves room for plenty for doubt. I even found a post on this forum from a woman whose mother died of scleroderma, and she said her mom never tested positive, even when she was at her worst. Scary!
I fully realize that scleroderma w/out skin involvement is an extremely rare disease. And I realize that I have a history of worrying about worst case scenarios. But there are things here that I just can't get over --- like the bacterial overgrowth and the low lung test score and the Rayndaud's. Too much to be a coincidence?
I feel like I'm going to go off the deep end. I'm a mess! I can hardly look at my 3-year-old daughter without crying, for fear that I have a terrible illness that is going to take me away from her. Oh, and I'm also pregnant and can't even enjoy it.
I've been too scared to go to a rheumatologist all these years --- and I've not wanted to put myself through that if it's just health anxiety. But I am living in a terrible limbo right now and feel like I have to do something. I found a local rheumatologist who was reviewed online as being really compassionate. So I bit the bullet and called today. To my surprise, she can see me in less than a week. Not knowing what else to do, I scheduled the appointment.
I am so scared and wondering whether I made the right decision. I can only hope this turns out well. Any words of support are so very much appreciated. I just want to get through this and focus on all the things that are important to me in my life.