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Worried w/no answers. . . seeking advice

424 views 15 replies 6 participants last post by  jayleigh330 
#1 ·
hey guys and gals,

i'm hopin someone has advice to offer. to make a long story short (hopefully :lol:), i went to emergeny two weeks ago because of chest pain. i had it 3 xs previously but this time it lasted 30 minutes. so, i was worried. so, i go to emergency & after 3 pills to slow my heart rate down to 50 bpm and a bag full of iv fluids, it wouldn't slow down. so, i ended up having a nuclear stress test (pretty much the same stress test i had in july which was negative). that was negative. i found out later that stress tests will only show severe blockage, not minimal or moderate. so, i go to my cardiologist yesterday. my heart rate was 104 when i got there. i didn't go to work so i was in bed all day up til my appointment. the nurse says "wow, you must have been really busy today," . . . uh, no. the cardiologist says he wouldn't order a ct angiogram because it has long term risks for cancer. no alternate test. his only suggestion was for me to see a gastroenterologist (i'm thinking he suggested that to rule out indigestion . . . which i know is NOT the cause) or my internist. i ask him why he's so confident my pain isn't due to any heart related issues. he says because the stress test came back negative. i relay to him what i've found out about stress tests . . . they won't show mild to moderate blockage. he says yes, a stress test will detect blockage that's AT LEAST 70%!! So, i ask, "if i have 50 or 60% blockage, the stress test won't detect it?!?!" he says yes. i got up & left.

i'm frustrated. i pray it's not a heart related issue. ,ost likely it's not. i'd just to have a little more of a confirmation than what he "thinks." what would you do? i have lupus so i already know i have an increased risk of having heart disease. i'm also african-amercian, again, increased risk.
 
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#2 ·
HI jayleigh, I can understand your concern, chest pain is scary. Has he offered any suggestion other than seeing a gastro? I would go back to my gp and have a chat with them. See what they think. Are you keeping a symptom diary of the pain? See when it happens for how long and any triggers? Otherwise you could get a second opinion.

I hope you manage to get to the bottom of things.

Deb
 
#3 ·
debatat;561928 said:
HI jayleigh, I can understand your concern, chest pain is scary. Has he offered any suggestion other than seeing a gastro? I would go back to my gp and have a chat with them. See what they think. Are you keeping a symptom diary of the pain? See when it happens for how long and any triggers? Otherwise you could get a second opinion.

I hope you manage to get to the bottom of things.

Deb
he offered no other suggestions. this has been a very disappointing year when it comes to doctors. i've been keeping a journal. i see my rheumatologist friday. she's competent. i'll ask her what i should do.
 
#4 ·
Hi Jayleigh,

I am happy to hear that your going to see your Rheumy this Friday and sure hope she has some ideas for you. It sounds to me like you need to find another Cardiologist to go to. Some times we have to pick through the basket of apples before we find one without bruises.;););)

I wish you luck and hope you get answers. Please come back and let us know how your making out. I am sorry your dealing with all of this and do not have any answers.:mad:
 
#5 ·
Hi Jayleigh,

Have you had an echo done? Do they know what your ejection fraction is?(ejection fraction is how well your heart is pumping)

I think he wants to rule out any other things that can go wrong. Kinda like jumping threw the hoops so to speak.;)

My husband had an CT angiogram done last year. They did find a blockage but it wasn't blocked enough to do anything about it yet.:eek:

Hang in there.
Lyn
 
#6 ·
KarolH;561955 said:
Hi Jayleigh,

I am happy to hear that your going to see your Rheumy this Friday and sure hope she has some ideas for you. It sounds to me like you need to find another Cardiologist to go to. Some times we have to pick through the basket of apples before we find one without bruises.;););)

I wish you luck and hope you get answers. Please come back and let us know how your making out. I am sorry your dealing with all of this and do not have any answers.:mad:
Thanks Karol. I have to just keep reminding myself that I'm my own best advocate. I'll start the search for a good cardiologist. While I'm looking, I need to find a good gastroenterologist and a good hematologist.
 
#7 ·
keebler;561965 said:
Hi Jayleigh,

Have you had an echo done? Do they know what your ejection fraction is?(ejection fraction is how well your heart is pumping)

I think he wants to rule out any other things that can go wrong. Kinda like jumping threw the hoops so to speak.;)

My husband had an CT angiogram done last year. They did find a blockage but it wasn't blocked enough to do anything about it yet.:eek:

Hang in there.
Lyn
I don't think I've had an echo. I only had an ekg & stress test in July and an ekg and stress test a couple weeks ago. I understand him wanting to rule out other things BUT doesn't he have to do his job either 1st or at the same time?!?! Sheesh. I don't understand how he can be so conclusive saying my chest pain is unrelated to my heart when he admitted that the stress test will only find blockage if it's at least 70%. Makes no sense to me. I called him earlier to ask why he thought my heart rate was high. The nurse called me back and said "oh yeah, it looks like your heart was high in July, 117." So, my thing is, he needs to rule out any heart related issues before he's focusing on someone else's job.

Thanks Lyn. I appreciate your words. :)
 
#9 ·
keebler;561975 said:
Hi Jayleigh,

You are right the cardiologist should be concerned about your high heart rate.:eek:
Could you have a talk to your GP and tell him your concern?

Take care,
Lyn
unfortunately, the only gp i knew of (the 1 who was even competent enough 2 suspect lupus) died. i just found out yesterday. :( my rheumy is hugely competent. i have an appt friday. i'll consult w/her.
 
#10 ·
Hopefully your Rheumy will know of another Cardiologist you can go to - this one sounds either incompetent or apathetic - maybe both!

Good luck and let us know how you get along :hug:

love
Lily
 
#12 ·
:) hi all!

just wanted to update and see if anyone else has experienced what i've been told i now have. i had a barium swallow monday, back xrays last week, visit to the gastroenterologist, and a rheumy visit.

so. . . gastroenterologist thought i may have gastroparesis. i told my rheumy and she suggested i do the barium swallow as it may give answers w/o having the recommended endoscopy by the gastroenterologist. turns out, i have disc narrowing (l4-l5) and esophageal dysmotility (mobility?). i callled the gastroenterologist a minute ago to ask if i should proceed to the endoscopy since my rheumy (actually her nurse practitioner) couldn't tell me if the results of the barium swallow indicated gastroparesis. the radiologist solely said "esophageal dismotility (mobility ? :lol:, sorry).

so, i'm confused. i did some quick research just now on disc narrowing and can't seem to figure out what the prognosis is. w/regard to the esophagel thingee, i can't figure out exactly what the **** that means. any thoughts?

thanks all. my prayers are w/us all dealing with this CRAZY illness!!! :)
 
#13 ·
I was told that I had a moderate degree of "stasis" after my barium swallow, and also that the pill got "stuck" and did not move until after several swallows of water. I did end up having a follow up endoscopy later on and it revealed nothing other than some gastritis/redness of the stomach. The end result was it was suggested to me that a take a few sips of water after every mouthful of food to help the food move down! *laughs*

For your spine issues... I have little knowledge there so hard to offer any advice.

Oh and earlier you were talking about your heart rate.... a friend of mine also tended to have a high heart rate (right around 100 to 105) and her doctors did nothing for her either. One asked her what medications she took and advised her to go off one particular kind of cold medicine as it had the effect of speeding up the heart rate and that did seem to lower it. I wonder sometimes if the worry about the effects of long term medication may be worse than a slightly higher than desired heart rate...

There are a *lot* of causes of chest pain that aren't too serious... and it does sound like they made sure yours was not caused by a heart attack (blood tests will indicate if you have already had one if they ran the right ones at least). My father has had a heart attack and had one artery blocked about 97%... and others were blocked about 50-60% and they did not even put a stent in those saying they had to be blocked worse than that to warrant the risk of putting a stent in. He goes to the Mayo Clinic so I have to trust they know what they are talking about. So I wouldn't worry to much about a test not being capable of showing less than a 70% blockage.

Also realize... that some heart attacks are not caused by blocked arteries but by blood clots. Be sure your rheumy has tested you for the clotting antibodies associated with lupus. This is something that can be overlooked.

I hope this helps!
 
#14 ·
Maia;562931 said:
I was told that I had a moderate degree of "stasis" after my barium swallow, and also that the pill got "stuck" and did not move until after several swallows of water. I did end up having a follow up endoscopy later on and it revealed nothing other than some gastritis/redness of the stomach. The end result was it was suggested to me that a take a few sips of water after every mouthful of food to help the food move down! *laughs*

For your spine issues... I have little knowledge there so hard to offer any advice.

Oh and earlier you were talking about your heart rate.... a friend of mine also tended to have a high heart rate (right around 100 to 105) and her doctors did nothing for her either. One asked her what medications she took and advised her to go off one particular kind of cold medicine as it had the effect of speeding up the heart rate and that did seem to lower it. I wonder sometimes if the worry about the effects of long term medication may be worse than a slightly higher than desired heart rate...

There are a *lot* of causes of chest pain that aren't too serious... and it does sound like they made sure yours was not caused by a heart attack (blood tests will indicate if you have already had one if they ran the right ones at least). My father has had a heart attack and had one artery blocked about 97%... and others were blocked about 50-60% and they did not even put a stent in those saying they had to be blocked worse than that to warrant the risk of putting a stent in. He goes to the Mayo Clinic so I have to trust they know what they are talking about. So I wouldn't worry to much about a test not being capable of showing less than a 70% blockage.

Also realize... that some heart attacks are not caused by blocked arteries but by blood clots. Be sure your rheumy has tested you for the clotting antibodies associated with lupus. This is something that can be overlooked.

I hope this helps!
thanks for your post maia. i don't think they made sure my chest pain issues aren't heart related and i'm not too comforted knowing your father's arteries were 50-60% blocked and they didn't do anything. i'm not suggesting a stent, but, i am suggesting doing something to prevent further blockage. . . like the 97% blockage your father experienced. i have no clue why i'm having chest pain, i'm not a doctor. i'm a psychologist. that is their job to find out what's going on.

the meds i'm taking don't cause elevated heart rate, so, we're still trying to figure out what's going on. i have an appointment w/an endocronolgist next week. hopefully he/she will have answers. anyway, thanks for responding! hope you're feeling well. :)
 
#16 ·
KarolH;563449 said:
I sure hope the endocrinologist can figure it out, thyroid, etc....just get you some answers. Good luck and please keep us informed.;)
thanks karol! what is comforting is to know i'm not alone in this. i can come to this site and know many people feel the irritation, confusion, and frustration i feel. the gastroenterologist says i have esphogeal dysmotility & that could explain the chest pain. but, he has no clue why i have an elevated heart rate as that is the endocronoligists' job to determine why. so, we shall see what he/she has to say. :) anyway, thanks for the support, answers, and advice everyone!
 
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