Diagnosis Problem

Echo with Stress test is how they caught mine
Originally 4 years ago i had a echo and resting was 22mmHg but they did not do a stress and im sure they would have found it then
Fast forward dec 24 stress test was done
Resting 38 valsalva 122

Hi @phillymom
Mine was found because I had a wonderful primary porvider who continued to order tests after I complained of many palpatations. ECG was abnormal (had an abnormal one 13 years prior and a stress test and the cardiologist was puzzled and just let it go.) so PP ordered a holter monitor and then an Echo, which is where they found it. A MRI was recommended and that confirmed it. When I started seeing a cardiologist at the HCM clinic at Mayo, he said it was there when I had first ECG and they missed it. You shouldn't need to be having symptoms for them to find it. Tests should do that.

My HCM was diagnosed when my primary care physician noted a murmur in my mitral valve for the first time. We "watched" it for a couple of years, and I was referred to a cardiologist when it persisted. I had tests including an echo, stress, nuclear stress, and I cannot remember what else, the result was that I had HCM. I had absolutely no symptoms for at least 10 years. As the thickening increased to some point, symptoms appeared, and I eventually needed surgery. @phillymom, can you suggest to your cardiologist to order a heart monitor? ASAP. A stress test? I am not a doctor, but nonprofessional logic and because of how my own HCM progressed, those were the tests that helped me to progress along the treatment continuum. If you are unhappy with how your cardiologist is taking your symptoms, perhaps it is time for another opinion. Good luck and let us know how things are working out!

Thats awesome they found it with your heart monitor.
Back in 2020 i went for my daily 3-5 mile walk i was really struggking just walking i could catch my breath it was the craziest thing legs tight chest tight it had never happened on a walk just when running and biking. I went to the emergency room and they admitted me and found nothing. They ran a ECG,EKG and did a Angiogram and did not do a stress. My resting was 22mmHG they sent me home after three days said i had mild cardiovascular disease, said my veins leaving my heart needed to dilate so they put me on carvedelol. Made me wear a heart monitor for 2 weeks
And found nothing.
When i saw the mayo doctor in dec he said i had heart failure at that time.
In fact he said everytime i got those feelings while exercising i was in heart failure!

Actually, the echo showed it. The stress tests showed how my heart was reacting to exercise. I do not remember a heart monitor as a part of the early care, that is not to say it wasn't. just do not remember that.

While I was thinking further about your post, @phillymom, please find out if your cardiologist is specially trained in HCM. I never realized that cardiologists have their areas of expertise and interest, nor did I realize how many different cardio conditions there are. If there is a COE (Center of Excellence) not too far away, it will be to your great advantage. @brumasterj thoughtfully posted this link recently - check it out! https://www.4hcm.org/center-of-excellence

Thank you walkinggirl.

Yesterday I was so short of breath, with pressure in chest & fatigue that I went to Urgent Care on a Saturday. That doctor said my ankles were not swollen much, and heart sounds good. He mentioned that HCM has same symptoms as a valve issue, but the lungs are swollen in back, which mine were not.

So he listened to all valves several times and his opinion was the Mitral Valve has regurgitation and should be evaluated. I do have an Echocardiogram scheduled by the Cardiology department at UW Health in Madison. Same people who never find anything wrong. If they still don't understand what's going on, I will go to Northwestern in Chicago for a 2nd opinion.

Last year I was up in Mayo Clinic for 2nd opinion - same problem. That cardiologist decided I have a left ventricular insuffiency but the pressures are still borderline so it did not meet the threshold for heart failure or HCM. They could not see the left side of Mitral Valve on CT or Echos for some reason, so I passed inspection. They did not recommend any change to my meds or lifestyle given by Internist back home. Waste of time & money up there.

Time for a new 2nd opinion now in Chicago.

Thanks for following this story.

Gail the PhillyMom

So you suffered with it for 13 years! Not fair. I read that it's difficult to diagnose, but that's awful. Doctors seem to look at me in disbelief when I describe the shortness of breath, fatigue & chest pressure. A doctor in Urgent Care just told me most people who are in their 70s have these symptoms, and ''you are doing very well for your age". I told him I don't know one person with them, so if you're surrounded by people with those symptoms, they are not getting diagnosed any better than I am!
I'm scheduled for a follow up Echocardiogram. The last one was said to be "normal", as well as the ECG, and Holter Monitor. The stress test showed ''left ventricular insufficiency with normal filling pressures" and it is said that my pressures are adequate and do not meet the threshold of heart failure. Also the CT scan was '''normal". So if they still don't find it on Echo, then I will go to Northwestern in Chicago.

Ask a Certified Camzyos Cardiologist to prescribe you an Echocardiogram. That is the way they can see if the septum muscle (which is located in the lower wall of the left heart ventricle) has grown more than normal for that is what causes the Hypertrophic Cardiomyopathy (either obstructive or non-obstructive). If you call 1-833-628-7367 they may tell you where to find a Camzyos Certified Cardiologist. That solves the issue if you need to be treated for that or not.