tag:blogger.com,1999:blog-17196208.post559260989166744634..comments2023-10-19T06:47:01.472-06:00Comments on LetsGoDU: Hypertrophic Cardiomyopathy Often Misdiagnoseddggoddardhttp://www.blogger.com/profile/00745826019598020062noreply@blogger.comBlogger5125tag:blogger.com,1999:blog-17196208.post-24354691476948136632016-11-30T05:27:05.197-07:002016-11-30T05:27:05.197-07:00I am a 35 year old female overweight type 2 diabet...I am a 35 year old female overweight type 2 diabetic with hypothyroid, just diagnosed with this HCM. I had been telling my Doctors for 5 years that I have been having signs of what felt like someone squeezing my heart so tight and then just letting go allowing blood to rush through my chest area and throwing up stomach acid no matter if I ate or drank. it wasnt until June of 2015 when I finally got to see a heart doc, was given an EKG and was told my readings was that of a 70 year old man, and rushed to the hospital to get a heart cat done, with an echo, stress test and all that fun stuff but not a MRI. nothing was found but a murmur on the left side of my heart, and high blood pressure. months later still complaining, so my heart doc sets me up with a right heart cat. nothing. I then get sent to a lung doc, and a GI. lung doc tested me for everything he could. nothing. GI tests me for stomach issues. I have a hernia in my food pipe. (sorry its early and I cant think proper to spell and grammar)and acid ref nothing else, so she sets me up with a shirk thinking I'm just stressed. no not the problem. at one of my appointments with my lung doc and GI, I tell them both as no one can figure out whats wrong with me, that ive had every test and blood work done that you can think of, but I have not had a MRI on my brain nor on my heart. the next thing I know I'm getting my heart MRI. wow if only someone would of thought of this 5 years ago!!! 2 hours after the MRI, my heart doc calls says there is some issues but I cant get you in here until 3 days from now. can you come in? I go in an am told I have a rare gen heart disease, HCM. but I'm not heathly and I don't exercise that much. so how is this possible?Anonymoushttps://www.blogger.com/profile/03115214645599674416noreply@blogger.comtag:blogger.com,1999:blog-17196208.post-19276374090731101792009-10-06T22:44:35.283-06:002009-10-06T22:44:35.283-06:00According to the article, "The best test is a...According to the article, "The best test is an echocardiogram, which is an ultrasound of the heart. It can cost around $1,000."<br /><br />I would hope that the test is covered under medical insurance and that you find a reputable hospital in the area to perform the test.<br /><br />Best wishes to everyone who has been touched by this misunderstood disease.dggoddardhttps://www.blogger.com/profile/00745826019598020062noreply@blogger.comtag:blogger.com,1999:blog-17196208.post-34315361094800773942009-10-06T20:08:49.135-06:002009-10-06T20:08:49.135-06:00My son passed away unexpectedly last month from HC...My son passed away unexpectedly last month from HCM. He was a beautiful, healthy, strapping boy who died while on vacation in California last month. He had texted his girlfriend that he had been so tired, but just did not know why. He would have turned 25 on 10/10/09. We are still in a state of disbelief, but are very concerned about our other son who is 27. How can I make sure that this doesn't happen again? Thanks.Unknownhttps://www.blogger.com/profile/11549693839065749501noreply@blogger.comtag:blogger.com,1999:blog-17196208.post-5110593252808494362009-03-12T16:02:00.000-06:002009-03-12T16:02:00.000-06:00I am a patient of Dr Mankowitz and living with HCM...I am a patient of Dr Mankowitz and living with HCM obstructed, My son is 12 and we have had him tested only finding the condition in him last year, His middle school in St Peters has brought an AED in to his school for safety and we have done two interviews with local news stations to help spread the word about this condition, I hope that more can be done to educate the Physical Education department in our schools, and the coaches that are caring for our children at times, pay attention, your body is trying to tell you something. I had rare symptoms until just years before they found mine.<BR/>Symtoms can include, light headedness, dizzy spells, passing out, shortness of breath, chest tightness, palpatations. If you have anything like these, first stop what you are doing, see a dr and follow through with investigating anything you are told, If you dont feel write about a diagnoses, dont settle. I highly recommend Dr Mankowitz if you need to seek a professional in the area of Hypertrophic Cardiomyopathy.Lisahttps://www.blogger.com/profile/17236694944794079897noreply@blogger.comtag:blogger.com,1999:blog-17196208.post-19188059938843342162009-02-22T21:52:00.000-07:002009-02-22T21:52:00.000-07:00I read this article with interest my son Kenyon di...I read this article with interest my son Kenyon died of HMC. Kenyon was 21 yrs. old, 2 mos. from his 22nd birthday. Kenyon was home from college for the summer he would have been a senior the fall semester. Kenyon was a chemistry major and was on the varsity basketball team. Kenyon had worked all day and went to his high school gym to play in a pickup basketball game to stay in shape. At about 6:00 p.m. I received a phone call telling me Kenyon was in the floor unconscious. At the hospital they tried without success to revive him. After an autopsy we would find out he had HMC. I still find it unreal after 16 yrs. that my tall, healthy looking son could die from something I'd never heard of. I have tried unsuccessfully to have changes made in the sports physicals in my area(such as limited echos)to be preformed by one of the best heart hospitals in Louisville Ky. It's like banging your head against a wall. It's always thank you Ms. Lacy we'll look into this and see what we can do. These hospitals in the metro areas should give back to their communities who support them and one way would be to help with heart testing for athletes. After Kenyon passed I called all around the country to find out about HMC so many colleges do not include the echo in their physicals. Such as I found out University of Louisville does use the echo because of the death of an athlete who had died at University of Ky but the University of Ky does not use the echo in their physicals. I talked to Dr.Barry Marron and another doctor in California who I can't recall his name at the moment these two doctors study HMC and also keep stats on deaths due to this condition. I truly believe these stats are not at all true stats! I have had some names they didn't have come to find out they get their info from people who read newspapers for them and report the deaths. If these athelets are not in a scheduled game the deaths most likely will not make the newspapers. So many of these deaths are not in a scheduled game just like my son.<BR/>The midwest, we live in Indiana where sports are so popular and so enjoyed, these deaths need to be noted so parents and families would understand this condition kills your child if unknown.<BR/>The fatigue is felt at the last and my son did complain of being fatigued in the last few weeks but he had a virus a few months earlier and he thought he hadn't gotten his strength back that was not the case. Well so much for our story, I just hope and pray someone will read this and try to help these athelets have better sports physicals. Thanks<BR/>Susan Lacy mother of Kenyon Lacy<BR/>slacy@yahoo.comAnonymousnoreply@blogger.com