Wednesday, March 24, 2010

Results

So it turns out that the thingy I have on my elbow is sarcoidosis. Since it arose from a scar, it's probably a scar sarcoid. He's given me a prescription hydrocortisone cream to treat the thing. I think the things on my legs that he said were soon-to-be varicose veins may also be this sarcoidosis. They're not turning into spider veins or varicose veins and they start out purple and go brownish, which is a more typical presentation of this disorder.

The dermatologist said that quite often things like this have lung involvement so he's having me do a chest xray and is sending me to a respirologist. Looking at the symptoms, I have a few - most notably, chest pain, fatigue, joint pain, and more. It's a pretty vague disease.

At least it's not cancer :)

I do have some questions for my oncologist when I see her next or maybe for some other doctors. Since sarcoidosis and cancer can happen in the same places, what does this mean if something were to show up on a scan, will we have to automatically biopsy? And is there a possible connection between the lack of lymph nodes (and subsequent reduced lymph circulation) in my left arm and this sarcoid that showed up on my left elbow? I'm sure I'll have other questions, too.

I had to drive to Oakville this afternoon to get these results and I let them schedule my CT scan for this morning. I had to be there by 8:20am and I was supposed to be home by about 10am which would give me time for a nap before the drive. As we all know, the best laid plans go awry.

The CT lab was running an hour late. On top of that, they had a really hard time finding a good vein on me for the contrast injection; one nurse tried three times and a second nurse was called in to do it. I learned that they now know what a PowerPort is and they have nurses who can access them. These ports are way more convenient for people with bad veins because that type of port can be used for CT/MRI contrast. When I had my port put in, I'd asked about getting a PowerPort but they didn't have them then... and it's probably too much bother to take out my current working port to put in a new one. Probably.

When I was finally ready to leave, they were in the middle of a "Code Black" drill, which apparently is a bomb threat drill, and no one was supposed to leave the building. I managed to convince someone to let me out but when I went to pay for parking, the machine wouldn't take credit cards and I didn't have enough change on me to pay. So I had to go back into the hospital to use the bank machine. Fortunately the drill was either over (or didn't affect the main lobby) and I could freely come and go, but all of this delay and back and forth stuff meant that I didn't get the nap I wanted. Luckily I made the drive each way with no problems ... but I expect that I'll be tired tomorrow.

2 comments:

The Hyperlexian Aspie said...

so sorry to read it is sarcoidosis, but also glad to read it is not cancer. it does explain many of the health problems you have been having lately.

naturally, i researched the possibility of links between cancer and sarcoidosis. odd to find that research has found some subtle possibilities of a link from sarcoidosis--->cancer, but no research has been done for the possibility of a link from cancer--->sarcoidosis.

medical research has advanced so much in many ways, but we have a long way to go in identifying the links between conditions and finding potential predispositions or precursors to conditions.

i really hope that your lungs are not involved, as if it is confined to the skin it seems like a much more manageable condition with a better prognosis.

thinking of you back in e.town. (((((hugs)))))

love,
vicki

Anonymous said...

It looks like it can get really nasty or be really mild. Let's hope you'll get the mild version.
Love, Mom