Wegs and Your Heart

[Jack]

Yes, EKG (or ECG) is an electrical test where they wire you up and check what impulses the heart muscle is giving. The echocardiogram is an ultrasound test with gel used to make a good connection and shows the blood flow through the heart's chambers and valves.

From the posts on this forum it seems that opinion is divided as to the importance of the echo test. I have had one in the past, but my consultants attitude seems to be that if my ECG results are good and I am showing no heart trouble symptoms then I don't need the test. Who knows? They certainly don't hesitate from testing me for everything going if they have any doubts so I just go along with them on this one.

[pberggren1]

I think I am going to get my GP to do an echo just to be on the safe side. And then when I go to Mayo I can take that with me along with all my other test results.

Not to get off topic, but maybe I will get an ultrasound done of my kidneys again and maybe of liver or other organs in that area?

So what you are saying Jack is that I would have to go in for an ultrasound to have this echo-cardiogram done of my heart?

[Sangye]

An echo is a special type of ultrasound. You just ask for an echo. Unless you're having problems in other areas, it probably doesn't make sense to get ultrasounds of everything. Do you suspect worsening kidney problems?

[pberggren1]

No I just like going to hospitals to have tests done. I'm kind of weird that way. I like to stay in hospitals.

[Jack]

The perfect excuse to lay in bed all day!

[Deanne Hull]

That is very sad, I will ask my doctor about that when I see him, thanks for bring it to our attention

[ranpar01]

While supporting and advocating for my Dad in various hospitals I've heard doctors say he has 'limited involvement' Wegener's or variations on that theme. It gets me furious, because I know something like this can happen. I don't believe there is such as thing as limited WG. We have learned at this point to completely skip our local small town hospital which gave the ubiquitous 'you just have pneumonia' diagnosis originally and we drive to the larger research hospital in San Francisco.

It's so sad to hear of this passing, my best wishes and prayers go out to his family.

[Jack]

I think that most of us who have spent some time on the forum now know that the concept of "limited involvement" is a dangerous one. The disease can turn around and bite you in an unexpected place at any time. It is a shame that some doctors use this term although perfectly understandable when the symptoms can be so different between patients.

[Nancy]

I have learned even with my "Limited Wegener's" to carry additional prednisone and pamphlets about Wegener's and vascultitis from the Foundation - because most people will look at you with a blank stare and go "Never heard of it". I was recently working - still testing out my wings after this exacerbation from my now regretable H1N1 shot....when I started to lose vision in the middle fields of both eyes. No headache, although me eyeballs felt sore...I could see peripherally and since I was at the hospital working - stopped work and went to the ER (small town)... I reported new onset vision loss and reported Hx of Wegener's vasculitis...then sat............... I called my daughter to let her know where I was, then called my wegs specialist and left a voice mail for nurse...
Someone was watching out for me... my vision improved on it's own. Just about the time the ER physician and I started to discuss vasculitis - which she had NO idea about - my Wegs specialist called - he spoke with her - took 5 minutes. I got IV solumedrol and then increased my pred. I saw wegs spec 2 days later - waiting to see if Genetech will help me out...
"Limited Wegener's" is like being partially pregnant.....there is no half and half... just sometimes less symptoms, sometimes not...