Just add one more to the pile!

Well, came back from the Rheumy's today. I felt beaten up by a prize fighter and I lost! He won't give me pain meds to help but he did at least up my soma to help oh I guess cut down on the pain I guess. He said most Rheumys won't go with short acting meds for chronic pain, which is my only option right now because of price. He wanted me to go back on the Duragesic but I emphaticly said no way one because I felt the med controlled me and it was too expensive for me and my husband to buy. He won't go the short acting med route at all.
We went back and forth for what seemed forever but I guess was about 20 minutes and all I got out of him was taking 4 Soma up from my 2 Soma a day to help with pain.
As you can see he so wanted to help me (feel the sarcasm) but wouldn't budge on how he wanted to help me.
Suddenly as I was about to wrap up this 30 minutes of pure torture, he goes well, I am still concerned about this elevated SED rate. My SED rate has been high since day one and nothing has stopped it from going up or down it just stays in a general range and my C-Reactive Proteins haven't done diddly either. On top of all that, my diastolic (the bottom number on the blood pressure for those who don't know) number doesn't seem to want to get with the program and stays in the 90's at all times, while my systolic is great and has come down since I have been on 100mgs of Toprol a day. So now on Wednesday, I have to go in for a CT Angio to make sure I don't have Takayasu's Arteritis.
Since it is pretty new to me, I will share what it is with you as well.
According to www.takayasu.org , the definition is as follows:

What is Takayasu's Arteritis?
In 1908, there was an ophthalmologist named Dr. Mikoto Takayasu who reported ocular changes in a 21 year old Japanese woman. Subsequently, Dr. Onishi and Dr. Kagoshima mentioned similar manifestations with the addition of absent pulses in the arms. Data collected through the years framed the criteria for classifications and presentation of Takayasu's Arteritis. By 1975, the disease was formally labeled Takayasu's Arteritis.

Takayasu's Arteritis is a rare, chronic, inflammatory disease primarily of the aorta and its branches. The subclavian, renal, carotid, and the ascending aorta arteries can also be involved. Takayasu's Arteritis affects more females than males and usually begins in the 2nd or 3rd decade of life. TA is occasionally called "pulseless disease" because there is difficulty in detecting peripheral pulses that sometimes occurs as a result of the vascular narrowing. It is also common for a patient to exhibit vascular bruits, and symptoms of their arterial involvement. The cause of TA is not known.

Symptoms may include: dizziness, fainting, low grade fever, muscle aches, weight loss, circulatory deficit, vision problems, angina, joint pain, claudication, malaise, hypertension, night sweats, stroke, fatigue

Making the diagnosis of TA can be extremely difficult. Unfortunately, it is very common for the disease to "smolder" in the walls of large blood vessels for many years, causing only non- specific symptoms, until major complication results. This can eventually lead to occlusion, complete closing of the vessels. There can be major complications resulting, in the dilation of the aorta with stretching of the aortic valve in the heart, resulting in severe valve damage, and critically reduced blood flow to an arm or leg. In addition, a stroke caused by high blood pressure of the blood vessels going to the brain, renal failure, and many other serious afflictions are also possible.

Diagnosis may be supported by abnormalities in the following: angiography (especially of aorta and branches), blood tests :sed rate (ESR), c-reactive protein, Albumin, Globulin and Fibrinogen, complete blood count, biopsy (rarely done), chest X-ray, ultrasound, arteriographic data, blood pressure measurements, magnetic resonance imaging studies, electrocardiogram

Diagnosis is difficult due to the erratic course of the disease.

Delay in diagnosis is common even when working with physicians experienced in vascular disease.

Synonyms include: pulseless disease, aorta arch syndrome, reverse coarction, young female arteritis

It is important for the Takayasu's Arteritis patient to work closely with his/her physician. make sure your physician accumulates facts on all your laboratory data, routine visits, medications, diagnostic tests, and surgical procedures. Make sure you listen to what signals your body may be telling you. Work together with a qualified physician to detect regression or progression of Takayasu's Arteritis.

So I get a beat-down from my Rheumy and I have to have yet ANOTHER test done. I don't mind the CT scan but I do mind the dye part....IV(big needle phobe here ) and all.
I warned him I would be a difficult case and I am proving it to be true.
So that was my day. Lovely wasn't it. On top of that he decides today of all days to harp on my weight. Figures huh? Well, how can I do something about my weight when I may have a heart problem!!!!!!
This is the second time he has mentioned Takayasu's Arteritis to me in a month and so I would guess that on the list of things that the SED rate may be indicating, he seems to be honing in on this one thing in particular. Not vascular illnesses in general but this one in particular. I mentioned something about it, but he says he can't rule it out yet.
Now from what I understand the treatment is close to what people with Lupus go through with the immmunosuppresants and corticosteroids, etc.
I don't blame Todd, he can't leave work at such short notice but I really don't want to do this alone.
I don't know how to feel right now to be honest, mad, scared, angry. I don't know.
But that is my update from the oh so pleasant visit with the Rheumy. So right now I am just annoyed and scared. I don't know what to do or believe.
UGH! Being sick really sucks!
How should I feel right now??? Anyone familiar with this illness? I know that it is related to Paget's disease of the heart which my grandmother has but in the bones instead. They are similar in design especially when it is Paget's of the heart. Is this inherited? Anyone have any info?
Thank you for listening everyone....I know at least I can count on you all for support. Even if it is just to read this post. Thank you.
If anyone has any info to pass along it would be greatly appriciated.