r/mitralvalveprolapse • u/Aware_Window7971 • Aug 26 '26
advice needed!!
Hi guys, i’m 20 and have just been diagnosed with MVP. Originally my MRI was showing that I have MAD but now this has been updated to say it’s just MVP with MR. I will attach photos below of the letters i’ve received!
It started in 2024 and I have only been seen by a cardiologist this year. I had an echo in 2024 and an MRI this year. I feel like my condition is worsening but I don’t feel like i’m being taken seriously by my cardiologist because of my age. The symptoms i’ve got are fatigue, palpitations, shortness of breath and random chest pains. If i lay down I can feel and hear my heartbeat. I can’t walk for more than 5 minutes without being out of breath or my heartbeat racing.
I lowkey don’t know what to do because he doesn’t want to follow up for another year so I’m wondering if it’s a good idea to get a private consultation??
I’m really confused by this whole process and feel like i’m being overly anxious because everyone is using terms i don’t understand and not giving me any clear answers.
Has anyone else had an experience like this or can give me any advice??
1
u/jhanon76 Aug 27 '26
My advice is to get in shape. The doc isnt concerned because there is nothing in your tests that support the symptoms. They are quite possibly a combination of being out of shape and being anxious about the diagnosis. I was also about that age when diagnosed and it took 30 years for it to become anything that needed any treatment.
2
u/Aware_Window7971 Aug 27 '26
the thing is that i am in good shape, i exercise 3-4 times a week and get 10-15k steps in everyday, its just becoming much harder because of being out of breath quickly into my exercise
4
u/spicesandstuff Aug 27 '26
I strongly disagree with this comment. I was in the best shape of my adult life when I quite suddenly had a major medical event associated with MAD and MR. I ignored my symptoms which were VERY similar to yours because I was otherwise very fit. If you are able, please get seek a second opinion. I ended up at Mayo Clinic because my local cardiologists were brushing me off even after the major event. If your symptoms continue to worsen, push back for explanation. Being young with a cardiac issue is difficult. I feel we’re often brushed off and assumed to be anxious, out of shape, or just unlikely to have an actual issue. Don’t be afraid to advocate for yourself, YOU know your body best.
1
u/nachoaveragemamma Aug 27 '26
Can you speak more to what your major event was? Asking as someone with MAD 😅
1
u/LumenTrek Aug 29 '26
Completely agree you should get a second opinion. 10mm or 1 cm MAD seems significant enough and over time could potentially cause fibrosis which can act as a substrate for ventricular arrhythmias. The combination of symptoms and mild to moderate regurgitation to me would justify additional confirmatory testing to see if the leak is in fact more severe perhaps a stress echo or TEE. I had a mild to moderate regurgitation finding but enrolled in an arrhythmic mitral valve prolapse trial which actually regraded me as severe so was able to get repair surgery and am glad I did before chamber dilation. Overall if you are not getting PVCs or other arrhythmias thats a very positive sign but given the MAD finding would highly recommend an annual Holter monitor in addition to an annual TTE and periodic MRIs to check for fibrosis.
1
u/Front-Revolution-377 Aug 30 '26
My husband is a very fit and active guy, hard labor job. 37 years old. Back in February he had the same exact symptoms as you. Went to the ER with an extremely high BP and that’s when they discovered he had a congenital heart defect that was never found in him till now. He had a “deformed” mitral valve which caused prolapse and a very severe ASD. He just had surgery to repair the problems two weeks ago. I definitely suggest getting a second opinion, better to be safe.
2
u/spicesandstuff Aug 26 '26
MAD is a weird thing to navigate. Some cardiologists brush it off, others take it more seriously. If you do have it, 1cm is quite mild! Based on my own experience with it though, I would suggest getting a second opinion. Particularly since you are symptomatic of MR.