trumpeting_angel
Full time employment: Posting here.
- Joined
- Mar 26, 2004
- Messages
- 526
Hello all -
I've just been diagnosed with Coronary Microvessel Dysfunction (CMD), a little-understood and under-diagnosed but probably pretty common heart problem.
If you have:
- A diagnosis of GERD but changing diet and adding medications never made much difference
- chest pain OR pressure, worse with exertion but sometimes possibly random
- shortness of breath with exertion
- fatigue
and especially if you:
- have cardiac risk factors (you know, smoking, obesity, diabetes, high cholesterol, etc.)
- are female, particularly post-menopause
You might have CMD. Of course, if you have those symptoms you should go to the ER! If, like me, they always give you a clean bill of health, consider CMD.
I had an episode of quite severe vomiting, diarrhea, and chills. Went to the ER and they found elevated troponin (excreted by heart muscle cells that are dying but has a number of causes). A half dozen tests and a stay on the cardiac care unit later, they finally did the cardiac catheterization (angiogram). The angio showed no significant obstruction, so they pronounced me healthy and sent me home.
Unfortunately, I haven't been the same since. In the last two months, I can only leave the house once or twice a day, I rarely drive out of my little town, my heart hurts when I become active, and the chest pain/pressure, shortness of breath, and fatigue are now chronic.
After a few weeks of this, my cardiologist said I might have an "extremely rare" condition called Microvessel Dysfunction. In an earlier life I had research skills, so I dusted them off, fired up Google Scholar, and learned a LOT.
The tiny capillaries in the heart muscle provide the oxygen for the heart to function. (They are not part of pumping the blood around the body - those are the major coronary arteries.). Since they are "the width of a strand of hair," until recently, there was no way to visualize them. They are least two types of dysfunction - spasms, and narrowing of their structure. There is now testing to visualize them, to provoke spasms, and to measure their resistance when saline is pushed into them. It can be hard to find outside of major urban centers.
Turns out that (the numbers vary) about 50% of people referred for an angiogram don't have significant obstruction. But they had symptoms! When that group was tested further (and here the numbers really vary), 30 - 80% have microvascular issues. Not "extremely rare." Treatment is in its infancy.
To learn more about this, try internationalheartspasmalliance.org, INOCAinternational.org, or just google the terminology. To find a center in the US that studies, diagnoses, and treats these disorders, try Microvascularnetwork.com. The first url also has international centers listed.
I've had a milder version of the symptoms for 15 years, when I was diagnosed with GERD, but never completely believed it. Three years of go, the shortness of breath got really bad and I was given a provisional diagnosis of COPD. I have had more advanced testing for both and I don't have either. Now I am more or less disabled, and many with this disorder are. If I weren't retired, I would have to stop working. (I'm still working on getting advanced testing, so there is still hope.)
BTW, I had high LDL cholesterol but no other risk factors. It is controlled with a small dose of a statin. I could probably exercise more.
Whatever you do, don't take "It's probably indigestion" or "it's a panic attack" as an answer if you don't believe it's the answer. Find expert help.
End PSA.
Hope this helps somebody!
Anne
I've just been diagnosed with Coronary Microvessel Dysfunction (CMD), a little-understood and under-diagnosed but probably pretty common heart problem.
If you have:
- A diagnosis of GERD but changing diet and adding medications never made much difference
- chest pain OR pressure, worse with exertion but sometimes possibly random
- shortness of breath with exertion
- fatigue
and especially if you:
- have cardiac risk factors (you know, smoking, obesity, diabetes, high cholesterol, etc.)
- are female, particularly post-menopause
You might have CMD. Of course, if you have those symptoms you should go to the ER! If, like me, they always give you a clean bill of health, consider CMD.
I had an episode of quite severe vomiting, diarrhea, and chills. Went to the ER and they found elevated troponin (excreted by heart muscle cells that are dying but has a number of causes). A half dozen tests and a stay on the cardiac care unit later, they finally did the cardiac catheterization (angiogram). The angio showed no significant obstruction, so they pronounced me healthy and sent me home.
Unfortunately, I haven't been the same since. In the last two months, I can only leave the house once or twice a day, I rarely drive out of my little town, my heart hurts when I become active, and the chest pain/pressure, shortness of breath, and fatigue are now chronic.
After a few weeks of this, my cardiologist said I might have an "extremely rare" condition called Microvessel Dysfunction. In an earlier life I had research skills, so I dusted them off, fired up Google Scholar, and learned a LOT.
The tiny capillaries in the heart muscle provide the oxygen for the heart to function. (They are not part of pumping the blood around the body - those are the major coronary arteries.). Since they are "the width of a strand of hair," until recently, there was no way to visualize them. They are least two types of dysfunction - spasms, and narrowing of their structure. There is now testing to visualize them, to provoke spasms, and to measure their resistance when saline is pushed into them. It can be hard to find outside of major urban centers.
Turns out that (the numbers vary) about 50% of people referred for an angiogram don't have significant obstruction. But they had symptoms! When that group was tested further (and here the numbers really vary), 30 - 80% have microvascular issues. Not "extremely rare." Treatment is in its infancy.
To learn more about this, try internationalheartspasmalliance.org, INOCAinternational.org, or just google the terminology. To find a center in the US that studies, diagnoses, and treats these disorders, try Microvascularnetwork.com. The first url also has international centers listed.
I've had a milder version of the symptoms for 15 years, when I was diagnosed with GERD, but never completely believed it. Three years of go, the shortness of breath got really bad and I was given a provisional diagnosis of COPD. I have had more advanced testing for both and I don't have either. Now I am more or less disabled, and many with this disorder are. If I weren't retired, I would have to stop working. (I'm still working on getting advanced testing, so there is still hope.)
BTW, I had high LDL cholesterol but no other risk factors. It is controlled with a small dose of a statin. I could probably exercise more.
Whatever you do, don't take "It's probably indigestion" or "it's a panic attack" as an answer if you don't believe it's the answer. Find expert help.
End PSA.
Hope this helps somebody!
Anne
