How scleroderma is portrayed on the Internet

When I first found out I might have Scleroderma, I searched the Internet to try and find out what I could. Bad move! When I told others I had scleroderma, the first thing I told them was NOT to surf the Internet for information.

What is shown on the Internet are the extreme cases, often of those that went untreated, and not the "norm" or 80% of what individuals with scleroderma will deal with. It's exactly what the specialist at Johns Hopkins said too.

The pictures are awful. The description of what happens to some is awful. It is bad enough to get those diagnosed with the disease, with no information other then what they read, to make funeral arrangements the next day.

As I mentioned in a previous post, every individual with Scleroderma is different. Some may get some of the advanced stages that the pictures/descriptions represent, but most won't.

So why look? After you are over the shock, maybe looking helps you be thankful in some way that you could be worse off? For me, it was something that I wanted to become familiar with enough to know I would try NOT to become one of those pictures. I will put in the effort and take whatever steps I was capable of NOT to become the extreme cases that are documented on these medical sites.

And why do all the medical sites seem to give the same info and portrayal of the disease? Do these sites plagiarize each other? They must since they are so similar. And, in many cases, the information is out of date or inaccurate. They certainly aren't what a specialist in the disease would describe the disease as. Because of this, other then superficial information, I consider any of these so called medical sites inaccurate and possibly detrimental to anyone looking at the sites as being an authoritative source.

There's even information on sites that specialize in scleroderma that is out of date or bordering on sensationalism.

So if you're looking for information on scleroderma, and you are using the Internet as your source, please take anything you find with a grain of salt, even if you seem the same info on multiple medical sites.

Next post I'll describe what happened at Johns Hopkins and my meeting with a top specialist.

Scleroderma and my skin

The most common symptom of scleroderma and where it got its name is what they call hardening of the skin. The immune system is tricked/confused into thinking that it needs to generate collagen which is what causes the skin problem.

I initially noticed it in my hands swelling which is what got me to the doctor in the first place. My hands continue to be the most impacted part. They remain swollen and sore with the skin being very tight and the fingertips extremely sensitive. When I wake up in the morning, I can't make a fist. As the day goes on, I usually get more flexibility in my hands, but they are never "normal". My fingers don't bend enough now to actually make a fist but I can usually get them to touch the bottom of the palm of my hand. I actually use some therapy putty which often helps loosing the joints up. I hope my hands won't get any worse and I try to stretch them multiple times a day. I have no hand strength and often ask someone else to do something as simple as crack open the top of a water bottle.

One of the oddest feelings is when it started to effect the skin on my face. I could actually feel the skin on my face changing. Each time I felt something, it lasted for 2 days. It felt like when you have sunburn on your forehead and wrinkle your forehead. when it occurred, my skin was very oily. I felt it on my forehead and on the top half of my face. I haven't felt any changes in a couple of months but the skin is still very tight. I can smile and it might not be noticeable to others, but the difference is very noticeable to me. I guess I don't have to worry about wrinkles.

Another place on my body that I felt a change occurring as it was happening was on my chest. I felt it for a few days between Christmas and New Years. The tightness on my neck and now chest prevent me from lifting my head very high. As I lift my chin up, even a little, the skin is so tight that you can see the skin on my chest move. Sometimes it makes my throat uncomfortable - at least I think it's the skin causing the discomfort. It feels as if you put your own hand around your throat and try to swallow.

I have no noticeable skin issues below my chest until you get down to my legs. I'm not sure if the skin is impacted on my legs or it's my hip and knee joints that are impacted from the disease but many days my legs are very sore. My ankles used to be swollen but that has seemed to have subsided. Bending my knees and lifting my leg to put a sock on in the morning is often an effort. Standing up I feel like an 80 year old man and not a 40 something man that was in excellent shape. My knees often feel as they "pop" when I stand up. Walking any significant distance is usually something that is painful too. There are days though where it bothers me much less, but those aren't as often as the days where it does bother me.

My feet were probably the 2nd place I noticed a change when this all started though I didn't feel it happening. My feet were swollen and the bottoms of my feet were always sore, just as my hands/fingers are. When my wife or kids rub my feet, at first they are so sensitive that a little pressure hurts, but after a couple minutes, it feels great!

The skin change is obvious to me, but maybe other then my wife, it's probably not noticeable to folks that see me every day. My mouth is a bit tighter which I think has to do with the skin on my face. My teeth feel a bit more sensitive which is also common with folks diagnosed with scleroderma.

Well enough about my skin. Next I'll talk about how scleroderma is represented on the Internet.

Meds, a referral and tests

I started out on some meds to address the raynauds and discomfort. I was given Nifedipine for the raynauds and Diclofenac as an anti-inflammatory. I don't know if it did much as I felt the same as I did before taking the anti-inflammatory.

I was also given a referral to see a top scleroderma specialist. The recommendation provided to me by the rheumatologist was someone in NJ, PA and at Johns Hopkins in Maryland. I chose to contact Johns Hopkins and was lucky enough to get an appointment just after the beginning of 2007.

I was then sent for a bunch of tests to see if there was an internal damage that was detectable, and also as a baseline to determine if any damage does occur in the future. As I mentioned in my initial post, I was extremely healthy. I had more tests in the span of one month then I did in the previous 30 years combined.

The first test was a PFT - pulmonary function test - where you breathe into this machine and it measures lung capacity, etc. Used for scleroderma to determine if there's any scarring which is causing diminished lung capacity. Next there was a CT (aka CAT) scan of my upper body. Third was a chest x-ray. Last was the worst which was called, I think, an Esophagram Motitlity study. The esophagram test required me to swallow what they called pop-rocks with a tiny bit of water. Then I needed to drink 2 of the chalky types drinks as they scanned my upper body. When I was done, I let out the biggest burp of my life. They determined that I had a weak esophagus which is typical of someone with scleroderma.

After returning to the rheumatologist after the tests were done I was put on Protronix which is an acid reflux medication. This was to help prevent any damage that a weak esophagus could cause.

Next post will be feeling changes occurring.

Welcome to Scleroderma Blog!

I decided to set up a blog on scleroderma and my specific case of it. I wanted to do this anonymously so there won't be any direct reference to my name or specific location.

Who am I?
I'm a 40 something year old male. I'm married and have children. I am otherwise extremely healthy.

Where am I?
I live in the US and more specifically, the Northeast.

When did I find out I had scleroderma?
In the winter of 2005 I noticed my hands would get uncomfortably cold. This continued into the spring of 2005. In the spring of 2005, my hands also started to swell up. That's when I went to the doctor to get checked out. They took some blood and I the results indicated I tested positive for ANA (anti-nuclear antibody). I was told to see a rheumatologist.

I saw an excellent rheumatologist who initially diagnosed me as having raynaud's. Additional blood tests were taken and came back that I tested positive for scleroderma. The rheumatologist wasn't 100% convinced but after another visit or two he was much more willing to commit to it.

So in the beginning of the fall of 2005 I was officially diagnosed as having scleroderma.