Takayasu’s Arteritis & Impending Angiogram

So, it turns out that I’m going to be having an angiogram to see if I have Takayasu’s Arteritis. I just found out. There was some sort of miscommunication between the doctor and myself. He told me “CAT scan with injected dye”. I think I would have taken it a bit more seriously if he had said “angiogram.”

This comes a day after I got an email from my mother saying that she read that Takayasu requires an angiogram for the final diagnosis and that basically worries her or somesuch.

So now I’m a little freaked out. I mean, if I my mom is worried, then it must be a big deal because she used to send me to school all kinds of sick when I was growing up. The one time I got to stay home from my minimum wage job was when I had 102° temperature and that was just the once. Generally I can gauge how serious an illness is by how worried my mom is about it. If she’s really worried, the person’s probably going to die.

Right now I’m waiting for the appointment to be made. The doctor had to fight with the insurance company to get the angiogram covered. I guess they didn’t think a 35 year old needed one. They refused the first request so he had to appeal. So now it’s approved but they’ve still got to schedule it with the hospital. They’ve got to get the angiogram in and also that CAT Scan of my lungs — which I kind of feel a little better about because after doing a little reading (and I do mean a little — there’s not much on the subject of Takayasu’s on the internet) I did find a reference to a possible scarring of lung tissue due to the narrowing of blood vessels around the area due to the disease. Scary, but not as scary as cancer, I think.

I’ve been trying to do some research — because I’m one of those people who likes to know things — but as I said, it’s hard to find information about Takayasu’s Artertis. I did searches on google, at online bookstores, etc. Very little info.

Here’s a couple of useful links in case anyone else needs them too (note: much of the information is repeated):

• Takayasu’s Arteritis Research Association
• John Hpkins Vasculitis Center - Takayasu’s Arteritis
• Takayasu’s Arteritis - MayoClinic.com
• The Cleveland Clinic - Takayasu’s Arteritis
  
• Everyday Health - Takayasu’s Arteritis

If you have any information on Takayasu’s you can share, please do.

Tags: Takayasu's Arteritis, angiogram, CAT Scan

Takayasu’s Arthritis, Cancer, & Cat Scans

I just got back from the rheumatologist follow up visit (after having had to sit through 2 hours of a budget meeting this morning).

Apparently, the Lupus blood test came back negative, but my Sed rate is still high at 90. He also doesn’t think it’s Sjögren’s Syndrome based on the blood work and my tear generation test.

So, now he wants to do some studies of my blood vessels to see if I have Takayasu’s Arthritis, which is a really rare disease where your blood vessels shrink. Apparently normally it shows up in Asian women, but he says it’s starting to show up in more and more non-Asian young women.

Anyway, now I’m waiting to be scheduled for a Cat Scan of my upper body where they’ll inject me with dye to get a blueprint of my blood vessels.

Also, apparently my chest x-ray had some worrisome dark areas. They sent it to the hospital to be looked at by a radiologist who agreed. So now I’ve got to have a Cat Scan of my lungs too. He would also like some studies of my lung capacity since I’m having trouble breathing without much added exertion.

Of course, my mother’s first reaction is “Does he think it’s emphysema?” I have no idea why she would ask that. I don’t smoke. I’ve never smoked. I don’t even date smokers. I don’t like the smell of smoke. Granted, my father smoked a pipe the first 18 years of my life, but I’ve never heard of anyone getting emphysema from 2nd hand pipe smoke.

(But don’t think it hasn’t crossed my mind that lung cancer isn’t a possibility. When he said, “dark spots” it was all I could do not to start bawling right there. I mean, “dark spots” is usually what they tell women when they see something funny leading up to breast cancer.)

Unfortunately he can’t start me on any kind of treatment still because we still don’t know what to treat.

I’m feeling a little frustrated and depressed this afternoon even though I know this is generally a long process. Maybe it’s the fatigue or the UTI or the daily migraine or the stress of having a dirty house or being behind on my hobbies again and starting to feel overwhelmed.

Tags: Takayasu's Arteritis, rheumatologist, CAT Scan, Lupus, Sjögren's Syndrome, ESR, cancer, emphysema