Posted , 2 users are following.
I'm seeing a cardio specialist this week and I need someone who has experience with cardio sarcoid to give me some help in the questions I should ask. Anyone's help is greatly appreciated 
1 like, 9 replies
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frustrated61
Posted
tangles frustrated61
Posted
Ask if they can give you a cardiac echo stress test instead which is the same as above but also includes a ultrasound of the heart in motion, the second after you get of the tread mill. This is a far more comprehensive test then the normal cardiac stress test. It has the potential of identifying a great range of heart conditions.
Regards Phil
frustrated61 tangles
Posted
I'm so happy you mentioned the stress test as I just had one a few weeks ago and this doctor I'll be seeing isn't in that health program I'm currently in. Meaning, I'll call ahead and get the results to take with me
thank you. In fact, this was a cardio stress test via ultrasound. I'm not able to treadmill because of the injuries I substained in an auto accident so they did the one where they inject some med to speed up the heart.
Phil, you have no idea how much I appreciate your input!! Should you think of anything else before I go, feel free to add it!!
Warm regards,
Frustrated
tangles frustrated61
Posted
To state the obvious...any recent blood tests and Xrays may say extra trips to have tests done when previous tests may already hold the info they are searching for.
I would be asking questions along these lines
Is the heart enlarged or in the normal range?
What is the heart rythme...is that normal for some my age?
Are both chambers functioning as they should?
Volume of blood pumped in the normal range?
Are the values performing OK...are there any leaks?
Should I be having a nuclear heart test to get a more conclusive
report on my heart function?
Hope these help a little.
Regards Phil
frustrated61 tangles
Posted
also, it has spread to the middle region of my right lung and I've been put on oxygen to help with this. I've so far refused steroids because of what happened to me last time around. I told the doctor that I wanted to see about the heart first and then I may change my mind...
Phil, thank you for these wonderful questions...I really appreciate it!!
Frustrated
tangles frustrated61
Posted
Dont read too much into an enlarged heart or any other organ for that matter.
Your health will be determined by multiple aspects of your body and the best persons to do that are your doctors when they are armed with maximum amount of info that can be accumulated about your health.
I have an enlarged spleen and liver due to sarcoid. Neither of these have stopped me injoying life.
Your previous experience with steriods...was weight gain your issue?
Regards Phil
frustrated61 tangles
Posted
My issues with steroids were weight gain and I was so sick I never ate and still gained almost 75 lbs, my neck seemed larger pressing down on the windpipe and high blood pressure etc...it was awful. After weaning me off the steroids I lost 85 lbs.
When put on Methotrexate, the symptoms calmed down and I was able to be weaned off for a while. So, I guess I will decide if the side effects will be worth it. I just know while on steroids, I also had to take add'l meds for the bad side effects...so I"m leary about it. Any thoughts?
Frustrated
frustrated61 tangles
Posted
I forgot to mention that I've had a cardio echogram via ultrasound and injections to make my blood pressure go up. Also had a myelogram but not for my heart but that's where they detected the nodules and enlarged heart...so I've had 2 tests that I'm hopeful will allow this doctor info to help me as quickly as possible
Thank you for responding
As always,
Frustrated
tangles frustrated61
Posted
Yes weight gain and steroids unfortunately go hand in hand. Seems there is no way around that. In my case the food tasted bad but at the same time I could not get enough of it. As well as mood swings.
Sounds like you are ready to consult your doctor with reams of info for them to be able to improve your health.
Having had your previous experience with steroid treatments at least you have a good idea of what lies ahead of you.
With this condition is seems there are no other viable ways of treating sarcoid.
Good news is that the doctors have had many years of learning and training. Thus they are the best ones to absorb all this info to come up with the right answers.
Best of luck with your doctor.