Entries Tagged with Takayasu's Arteritis
August 31st, 2006
So, I saw my GP yesterday afternoon. We went over the concerns of the Rheumy with the blood in the urine; plus I got a copy of the results of some of my lab work that the Rheumy did at his office. I don’t understand much of it, but I have a copy of it now. (By the way, it says I have 16 of 18 of the trigger points for myalgia but my alarming Sed rate is what keeps me from the fibromyalgia diagnosis…that’s what’s written on the paperwork.)
Anyway, one of the things that the Rheumy didn’t test for is IgA Nephropathy, an autoimmune kidney disorder. So, I have to do this 24 hour urinalisis for the Rheumy (re: pee in bottle) and at the end they are taking some blood to do a creatin protein (sp?) work-up anyway so they’re now going to take even more blood and do a work-up for IgA Nephropathy too. Depending on the result of that work-up, if it comes back positive, I’ll go see a Nephrologist, and if it comes back negative, I’ll go see a Urologist. Meaning, either there’s something wrong with my kidneys or my bladder.
Plus, that surgeon has never gotten around to sending anything back to the GP about refering me to a GI Specialist. However, she finally agreed to skip the waiting, so they’re refering me to one.
Meanwhile, I’ve got a horrible cough in my chest but it’s just a cold, nothing to worry the actual doctor with. I just can’t seem to stop coughing. Cough drops don’t help and it’s getting to the point where I pee just a little every time I cough, which is very embarrassing. Gah! You know, my puppy cannot sleep if I wake him up every few minutes coughing!
Tags: wellness, Takayasu's Arteritis, fibromyalgia, autoimmune kidney disease, IgA Nephropathy, chest cold
August 28th, 2006
After a terribly stressful day involving about 100 phone calls concerning an incorrect Radiology order, an out of town doctor, and some necessary emergency blood work and other lab work (re: pee in cup), I actually have some good news.
While I am still having an angiogram, they are going to be doing a CT angiogram as opposed to a catheter angiogram; the CT angiogram is less invasive and is less likely to have complications. In fact, they don’t even put you “under” for the CT angiogram and you can even drive yourself home. Whole thing should take like 20 - 30 minutes.
Anyway, I’ll be having both CT scans (the lung and the angiogram) Wednesday evening after work. I just have to fast for 4 hours before I go have it done.
This sounds a lot less scary than the other way.
Tags: Takayasu's Arteritis, CT angiogram
August 25th, 2006
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):
If you have any information on Takayasu’s you can share, please do.
Tags: Takayasu's Arteritis, angiogram, CAT Scan
August 23rd, 2006
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
August 2nd, 2006
I saw the Rheumatologist yesterday finally. Very nice guy. I feel comfortable with him and I think he’ll get to the root of the matter, whatever it is. He’s not one to jump to a diagnosis, which I like, and he doesn’t ignore what I’m telling him either.
I had to do some extra tests while I was there.
There was one for people who complain about dry eyes to see how much natural tears you do produce which was very weird and irritating. They actually put paper strips in your eyes and you close your eyes for five minutes and then they measure the water stains. Anyway, apparently my eyes are not as dry as I think they are.
Also, I had to have some chest x-rays because I complained of increasing shortness of breath with activity particularly involving inclines and stairs. That’s something my GP hadn’t ever worried enough about in the last two years.
He said that the bloodwork that my GP had ordered prior to my trip to England had pretty much come back o.k. except my erythrocyte sedimentation rate (ESR). He told me that someone my age should have about a 30 but my Sed rate came back at like 112. Now J had warned me that this particular test wasn’t always accurate so I wasn’t alarmed. In fact, the Rheumy himself told me that the test was known to be problematic; if it isn’t performed correctly by the lab, the results can be inaccurate and even if it is, the results don’t always mean that the inflamation is particular to anything in particular. In fact, the results could have been skewed by my gallbladder issue.
So, he reordered that particular test plus ordered a C-reactive protien (CRP test), which is supposed to be more specific or something in pin-pointing inflamation present in the body — apparently if inflamation is one of the symptoms, fibromyalgia is not likely the culprit and it’s likely to be another disorder, syndrome, disease.
Because many of these illnesses are really diagnosed by process of elimination, my Rheumy has three illnesses he’s considering ahead of fibromyalgia:
- Lupus (which he indicated he’s doubtful it is)
Lupus (systemic lupus erythematosus, or SLE) is a chronic disease that can cause inflammation, pain, and tissue damage throughout the body. Lupus is an autoimmune disease, in which a person’s immune system attacks its own tissues as though they were foreign substances.
[…]
Lupus symptoms vary widely, and they come and go. Common symptoms are fatigue, joint pain or swelling (arthritis), fever, and skin rash (especially with sun exposure). Mouth sores and hair loss may occur. Over time, people with lupus develop nervous system symptoms, most commonly migraine headaches. Periods of time when symptoms worsen are called relapses or flares. Periods of time when symptoms improve are called remissions. Lupus symptoms rarely disappear completely. [www.webmd.com]
- Sjögren’s Syndrome
Sjögren’s syndrome (pronounced “show-grins”) is a disorder in which the immune system attacks the body’s moisture-producing glands, such as the tear and saliva glands. These glands may become scarred and damaged, and exceptional dryness in the eyes and mouth (sicca syndrome) may develop. Sjögren’s syndrome may also cause fatigue, pain in the joints, and problems with the function of vital organs, such as the lungs, kidneys, and nerves.
[…]
Commonly, people with Sjögren’s syndrome may notice:
- Joint and muscle pain.
- Exceptionally dry skin with decreased sweat production.
- Vaginal dryness, causing discomfort, itching, and painful intercourse.
- Burning sensation (heartburn) in the chest or throat caused by abnormal backflow of acid and other digestive juices.
- Dry nose and throat, which can lead to sinus infections, bronchitis, and pneumonia.
- A yeast infection in the mouth (thrush).
- Increased fatigue.
- Skin rashes, bumps, and bruises that can be sensitive to light.
[www.webmd.com]
- Takayasu’s Arteritis (this is the one he seemed most interest in though it’s extremely rare)
Takayasu’s arteritis is an uncommon condition in which inflammation damages large and medium-sized blood vessels. The vessels most commonly affected are the branches of the aorta (the main blood vessel that leaves the heart), including the blood vessels that supply blood to the arms and travel through the neck to provide blood to the brain. The aorta itself is also often affected.
Less commonly, arteries that provide blood to the heart, intestines, kidneys and legs may be involved.
Inflammation of large blood vessels may cause segments of the vessels to weaken and stretch, resulting in an aneurysm (bulging blood vessel). Vessels also can become narrowed or even completely blocked (called an occlusion).
[…]
Approximately half of all people with Takayasu’s arteritis will have a sense of generalized illness. This may include low grade fevers, swollen glands, anemia, dizziness, night sweats, muscle aches or arthritis.
The changes that occur in Takayasu’s arteritis often are gradual, allowing alternate (collateral) routes of blood flow to develop. These alternate routes often are smaller “side roads.” The collateral vessels may not be able to carry as much blood as the normal vessels.
In general, however, the blood flow that occurs beyond an area of narrowing is almost always adequate to allow tissues to survive. In rare cases, if collateral blood vessels are not available in sufficient quantity, the tissue that is supplied with blood and oxygen by those vessels will die.
Narrowing of blood vessels to the arms or legs may cause fatigue, pain or aching due to reduced blood supply-especially during activities such as shampooing the hair, exercising or walking. It is much less common for decreased blood flow to cause a stroke or a heart attack. In some people, decreased blood flow to the intestines may lead to abdominal pain, especially after meals.
Decreased blood flow to the kidneys may cause high blood pressure, but rarely causes kidney failure.
Some people with Takayasu’s arteritis may not have any symptoms. Their diagnosis may be discovered when their doctor attempts to take their blood pressure and has trouble getting a reading in one or both arms. Similarly, a doctor may notice that the strength of pulses in the wrists, neck, or groin may not be equal, or the pulse on one side may be absent. [www.webmd.com]
So, they drew some more blood and told me to come back in three weeks. Here’s the thing. I know I was feeling particularly crappy yesterday — the plumbing was all backed up for days, I told them I’d been having a migraine…last night I was having some weird pain in my lower back, which I assume is either associated with PMS or the backed up plumbing…I can’t help but think that somehow that’s going to result in an elevated Sed rate again.
Heck, I feel crappy today. Migraine, back pain, stomachache. I’m all stressed out about seeing the surgeon.
Tags: Rheumatology, Takayasu's Arteritis, Sjögren's Syndrome, Lupus, Lupus, ESR, CRP, fibromyalgia
