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Old 03-09-2010, 07:08 PM #1
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Default Nothing with the echo...

Well. That was fairly dissapointing. Yet I met s very pretty girl that did my echo

they said everything was ok. Sucks. And doesn't suck. I knew it was horrible, but I figured something was happening. They're sending me home tomorrow, and having me followed by a cardio. As we speak I'm having chest pains and all of a sudden got dead tired. My pulse is 90. I'm struggling to keep my eye open.



I wish I could figure out what's going on. Damn.

Thanks for all your support.
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Old 03-09-2010, 07:18 PM #2
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Remember how we were talking about the salt thing? Are you able to ask your doctor what your potassium level is? My levels are always low since starting prednisone, and I also will have the sensation of having an irregular rhythm in my heart now and then...

I'm not exactly sure about how the relationship between salt and potassium works, but I recall reading something that seemed to imply that when on prednisone, and if you consume too much salt, the salt is retained, and more potassium is lost....This seemed to fit in with my 'episodes' where I'd get sorta dizzy, sweaty, have a horrid headache, and have little bouts of feeling like my heart was skipping, like that feeling you get when you go down a rollercoaster- but it'd last for just a moment, but was frightening...

I'm still not quite sure if salt/potassium was actually responsible for these episodes, like I said, but it seems to fit...

SOrry you haven't gotten more concrete answers...I know that the 'not knwoing' is the worst part...

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Old 03-09-2010, 11:14 PM #3
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Tyson, I would see that cardio as soon as you can. The problem with an ECG and an echo is that it sees the structure of your heart but it does not tell you if there is a problem somewhere else, like in an artery. And it doesn't tell you how your heart, etc. does while under stress (like with a stress test!). There are other tests like an ankle-brachial index that is simply a BP taken on your ankles and arms. There is a carotid artery ultrasound. There is listening to parts of your circulatory system a cardio can do. They can check your hydration level by doing serum and/or urine osmolality. Just because they said the echo was fine does not mean you are fine.

Does your oxygen saturation drop when you have pain? When you walk? These are the kind of things you should write down. You can get an inexpensive oximeter from Amazon.com but I would make sure you read the return policies just in case.

There are other reasons for chest pain. Go over everything you can with the cardio. Do not be "discouraged" because they didn't find anything wrong with your heart. It's fantastic to have a good heart!

An internist should be able to look at your situation from all the "body systems" and figure out what is going on. I am assuming they have rechecked your erythrocyte sedimentation rate, c-reactive protein, fibrinogen and pro-time.

Take time and list everything. When you started Accutane and when you went off of it. When you started every drug you're taking, doses, etc. What ALL of your symptoms are. It takes less time for a doctor to read a list than to hear you say all that.

You have a medical problem that needs solving. That means that you need to bring with you as many "clues" as you can for whatever doctor you see. Don't bring a cardiologist only heart clues. All doctors need to know everything about your health. You never know which one may be the one to figure it all out.

I cannot imagine how I would've dealt with all this at age 17. You are doing great at it. Keep documenting and asking questions. Get your medical/test records, just in case they aren't telling you everything because you are a "minor." They can legally do that, by the way.

And you always have to look at drugs as a cause of any symptom. They often are the culprits.

I hope you get answer soon. Please take it easy in the meantime. Go right back in if you feel you need to. Don't let a negative test keep you from listening to your instincts. Something is going on.

Annie
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Old 03-09-2010, 11:46 PM #4
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My sister has a LOT of chest pains with her pleurisy. She, and several doctors, first thought it had something to do with her heart. I wonder..............

Pleurisy is common in some autoimmunes, I think.
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Old 03-10-2010, 12:02 AM #5
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I would like to swear now, even though I can't . . . this will have to do.



I thought of this last night but forgot about it today due to weak neck muscles and a raging headache.

WHY the heck didn't they do a chest CT with contrast to rule out a PE (pulmonary embolism, AKA a clot)?!!!! Did they even do a chest x-ray?

There are other things than the heart that cause chest pain. I can't believe they didn't even do a "look see" of your lungs/arteries. Not even funny.

I know I asked before but did they do a D-Dimer?

I really think they are not seeing the whole picture here due to your age. They must think you are Superman or something.

And there is not only APS, which is VERY common for people with autoimmune diseases to have but cardiolipin antibodies too.

Good thought about pleurisy too, Jana.

This is silly, Tyson. They should be thinking about a clot due to all the plasmapheresis you have had plus the thick blood (c-reactive protein, etc.).

Okay, my head is going to explode now so I have to go.

Annie
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Old 03-10-2010, 12:37 AM #6
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Annie- you sure do know alot about this stuff.

First of all- they have not done a d-dimmer. Mri, or chest xray.



The last of these that I've had was a MRI about a year ago to check for an anyersm. Yet not since.

Tomorrow when my neurologist comes in- Dr. Massey, the specialist. I'm going to sugguest all of these tests. What if it was something in my head? Causing the horrible headaches.

I'm not sure what's going on- yet my symptoms: random very sudden weakness which lasts for about 20 minutes, feels like i can't move, or walk. Horrible SHARP pains in my head. Usually concentrated on the sides. Tightness in chest. Right on the aide of the heart. And arm weakness.


So. Hopefully they will atleast do some of these tests.

Should i ask the doctor on call tonight, (it's 12:30) to Do a d-dimmer now?


I'll be seeing doctors by 7:45. So. I will check it all out.


Thanks.
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Old 03-10-2010, 12:46 AM #7
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I think you should be sleeping!

I am so ticked off that they have not looked at the big picture with you.

A clot should've been the FIRST thing they checked. Was it Jim (formerly of TX, now in MI) who had a PE? A friend of mine got one after IVIG and they figured out she had APS. I've know more people who have had clots after invasive treatments or procedures. A D-Dimer is a simple blood test, which any doctor in his or her right mind should've ordered. I've had it done after surgery, when I've had heart pain, etc. It's a standard test.

If it were me, I'd at least bring it up to a nurse and let her run with it. Maybe ask her why they haven't considered a clot or PE. Then watch her face turn ashen as she turns to sprint out the door.

This is serious stuff and I simply don't get the doctoring. Don't worry, you are in the right place to figure all this out. As my Dad would've said, "Don't fret."

I would say to get a "little" mad at them in the morning but I don't want your BP going up!!! At least be calm and serious. I'm figuratively slapping them upside their heads.

You get some sleep. Talking to a nurse before you do will help. They really do know what they are doing and they sort of "run" the place (sorry, docs).

Annie
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Old 03-10-2010, 12:48 AM #8
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Did I mention here I have scoliosis aswell? It's not horrible yet sitting in bed, it is.
I'm trying to think of everything. I'm also getting sharp bouts of pain all over, randomly. Like just had some in right arm. Could all this result from a clot?

Thx.
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Old 03-10-2010, 12:54 AM #9
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Absolutely it could. Or an infection. Or your spine compressing nerves.

Has anyone even suggested, like I said in a previous post, a darn BABY ASPIRIN?!!!! Maybe ask the nurse for that, if it's okay.

Any itching or warm areas anywhere? I've only had a superficial clot and I had redness, warmth and itching. You don't even have to have symptoms of a clot.

Just relax - you are going to get the care you need.
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Old 03-10-2010, 12:55 AM #10
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Haha your right, i should be sleeping. Yet I can't. But I do think try should have checked it as well. It's outright stupid.


I just asked my nurse to check on it, she should be right back. This is the charge nurse, andnthe night nurses here at duke, shift around so much, none of them know my story. But I will say why haven't they consideRed any clot or pe.
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