Hey everyone! It's been 3 months since my last update and we're back from our latest visit with Dr Wigley at the Johns Hopkins Scleroderma Center in Baltimore. The visit went very well.
A year ago (Dec 2006), between Christmas and New Years, I tried to go skiing with my family and friends but it just wasn't possible. It was painful to just have the boots on let alone ski. Well exactly one year later, between Christmas and New Years (Dec 2007), I was able to ski for 4 days straight without any pain at Mt Snow in VT. The conditions were magnificent, but even if it was nothing but ice I would have been so excited to be out there skiing. What a completely different feeling then 12 months before when I was approaching the worst I had felt. I also had a blast going skiing with about 15 folks from work when we all headed up to Hunter a few Fridays ago. It was gorgeous and we all had a great day.
I have been feeling very good for a couple months now starting this past December. I've had no new pain or issues and other then my hands being sore most of the time I have nothing to complain about. As late as this past fall I would need to stop multiple times on the way from NJ to Baltimore to get out and move. It was painful to just sit that long in the car. Today I can drive back and forth without stopping. Things have really improved. I'm really hoping it continues and I can attempt to try and hike again even if it is just a few miles. Before all this started I was able to hike 12-15 miles in a single day and go out the next day and do it again. I really miss it so we'll see how things go this spring.
So back to Baltimore we went today. My weight remained constant (they don't want it to drop too much) and my blood pressure is excellent. Dr Wigley came in, asked me how everything was, and we discussed how I was feeling. We then reviewed some lung tests I had last month and everything looked good. The main test is a PFT - Pulmonary Function Test. I have it a couple times a year. It measure lung capacity as scarring of the lungs is typical with scleroderma. Well I tested in the high 80's (88-90 out of 100) based on my height/weight. Dr Wigley says that's "normal". What they look for is any decrease. I also had a test that's the equivalent of an ultrasound of my lungs and that was fine too.
Dr Wigley checked my skin and he said everything looks great other then from my wrist to my fingers. They aren't bad, but just not great. He feels that where my skin was previously tight/hard on my arms and chest it has shown some improvement. I feel an improvement on my chest/neck which is where I used to feel it the most. I'm never really sure if something is actually improved or I'm just used to it - it's just something I can't distinguish. But if he says it's better who am I to argue. Now if my hands would just stop being sore. THAT I will notice.
My wife noticed a couple weeks ago a minor rash on my face. I didn't really notice it but we told the Dr. He said it was probably rosacea as it's not uncommon with scleroderma patients and gave me a couple of prescriptions to try out. Other then that, we decided to reduce the cellcept medication by another dosage per day for the next 3 months. Other then that, no changes. Things are pretty good. I head back there mid June for my next checkup.
Stay well!
Tuesday, March 4, 2008
Winter 2008 checkup
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2 comments:
Hi. It's good to read something somewhat positive about this terrible disease. You seem to be dealing with it so admirably. I have yet to get a formal diagnosis. I saw a specialist in NJ and she barely spent any time with me. But I know my body, and it feels like a long road before I'll get treated for this thing. Did you have to wait a long time?
It didn't take long for my rheumatologist to diagnose my symptoms as scleroderma. That seems to be key since folks can often go for a long time (years) without being officially diagnosed as the disease continues to do damage. I felt "different" in the spring and after 2 visits to the rheumatologist, he was pretty sure and my 3rd visit he made the diagnosis. It progressed rather quickly over the course of those 3 visits.
I then was lucky to get an appointment within 6 months to see Dr Wigley in the Scleroderma Center in Baltimore. Within a year after being under his care and treatment, things improved drastically.
So yes, there's hope that folks that can be quickly diagnosed and treated can see an improvement. I think this disease is different for everyone that has it. Obviously, I've got a lot of years ahead of me so what will happen tomorrow is always an unknown, but in the years ahead there's also the hope for a cure or even better treatments to address the damage that was already done.
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