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[Possible HCM??]
Author: Anna (209.147.134.---)
Date: 12-14-01 03:53
I dont know how this forum works, I thought I posted this in the please help section but its not showing up. So if this is a repeat Im sorry. I am hoping someone can help me. I am 23 yrs old and have been having horrible chest pain, shortness of breath with walking, sleep problems, and unable to lie down flat, for 2 months. Ive been to the ER, a heart doctor, and every other type of doctor and everyone says they cant find anything. Ive been told I have heart murmmers and paliptations, and the ECHO showed a slight thickening of the wall, but they said nothing is wrong with me. I did the stress test for the heart and it was normal. Ive resorted to doing my own investigating because I have figure out whats wrong with me! I got fired for missing too much work, and I can barely stand up in the shower for 5 minutes when I get the horrible heavy feeling in my chest. I stumbled on this site and it seems like the symptoms are similar. Did anyone have trouble being diagnosed with this? Is it possible a doctor could have missed it? Thank you so much for any advice you have, I would really appreciate it!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: Possible HCM??]
Author: ira leichter (---.proxy.aol.com)
Date: 12-22-01 02:00
My doctors missed it almost 6 years ago. I had an abnormal EKG but no one followed up on it. A doctor here in LA finally found out what it was ..HCM
Go for an Echo stress test.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: Possible HCM??]
Author: Gary Ballard (---.proxy.aol.com)
Date: 12-24-01 11:19
I had similar symtoms when I was 29. I am now 35. I was diaognosed with non-obstuctive HCM. I began with restrictive activity and atenolol daily. The initial thickness of the septum was 18mm. now it is 23mm. I got more symtomatic with age. Because of family history and progressive thickening I had an ICD implanted last year. I take a coated aspirin daily with 100mg of atenolol and nitrolingual spray as needed for chest discomfort. Nitro is to be used sparingly because of HCM however; it does work at times. The best suggestion is to have your medical work done and follow their recommendations. Good luck!
Gary
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: Possible HCM??]
Author: cynthia (---.nas48.philadelphia1.pa.us.da.qwest.ne)
Date: 12-27-01 11:46
Yes, it is possible to have missed this. I was diagnosed at age 2, but my family at the time happened to live near a hospital that had experts in hcm/ihss. I see a local cardiologist now, but people on this board know well who the hcm/ihss experts in the world are. What you describe certainly does not sound normal!
Can anyone on this board help with the name of top cardios?
Cindy
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: Possible HCM??]
Author: BRL (---.sec.gov)
Date: 12-27-01 12:30
Anna,
My wife lost two sisters to what appears to have been HCM. The medical examiners ruled the causes of death as something else but other investigations quite a few years after the deaths revealed they both had slight thickening of the left ventricle. We later found out that her uncle who died in 1966 (which was ruled as a heart attack) definitely had hypertrophy. So it looks like doctors can definitely miss this thing.
Of course, it is a good sign that you have been examined by so many doctors and that they say there is nothing wrong with you. However, I am a confused by your message because it states that you have murmers and a slight thickening, but yet the doctors have found nothing wrong with you. Since your echo is showing a slight thickening, you might want to consult with an electrophysiologist who is well versed in HCM ( if you haven't already) to get some piece of mind.
Because HCM can be an inherited familial disease, we have been getting other family members examined (ekg, stress, echos, etc.) But my experience with all this is that many doctors, including some cardiologists, do not have much expertise in this area and you might want to find a specialist.
Best wishes.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: Possible HCM??]
Author: Kelly (---.wat.localline.com)
Date: 12-29-01 12:43
Anna, HOCM is more common in males but can CERTAINLY be found in women. It sounds as though HOCM could very well be the culprit, however, if it isn't, with these symptoms, there IS a culprit. I suggest that you seek a second, even third or fourth, opinion if necessary. I have been a cardiac nurse for over 12 years and have seen enough to know that DOCTORS ARE HUMAN!! Don't give up your search! It's great that you are doing your own research...
Kelly
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: Possible HCM??]
Author: paige (---.proxy.aol.com)
Date: 12-30-01 23:54
sounds like Hcm to me I was diagnosed w/ it last month and told exactlly what you were a slight thickening of the heart and put on meds they make me tired but they help and i wasnt feeling half of what you seem to be good luck and find a better Dr.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: Possible HCM??]
Author: beckley (---.dsl.mindspring.com)
Date: 01-01-02 16:28
Hi,
It sounds like you need a second opinion. Many people are certainly misdiagnosed or ignored all the time. It is highly unlikely that "a slight thickening" is normal.
Please get a second opinion right away --don't wait. There is clearly something wrong and the doctors you are seeing aren't qualified to find it.
Sarah
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: Possible HCM??]
Author: Tim (---.westgroup.com)
Date: 01-02-02 12:18
Anna --
I've emailed you already, but I'm posting most of my response here for the benefit of others. Sorry it's so long.
=-=-=-=-=-=-=-=-=-=
Please keep in mind that I'm approaching this from the point of view of
someone who has HCM and not that of someone who is a medical professional.
There seems to be a broad spectrum in the severity and nature of symptoms, so
my experience is not necessarily similar to another person's. I'm going to
respond to your questions in different order than what you wrote, so I can
address them more logically.
>I stumbled on this site and it seems like the
>symptoms are similar. Did you have trouble being diagnosed with this? Is
>it possible a doctor could have missed it?
I'm 33 years old, and the doctor noticed I had a heart murmur when I was
born. As many babies are born with murmurs, this usually isn't cause for
alarm. I don't know what medical practices are standard and usual these
days, but I believe my mom told me that she was told there was no reason to
be alarmed. I had my gallbladder removed at the age of 19, and no mention
was ever made to me about the presence of a murmur, as I am sure I was hooked
up to an EKG the entire time.
When I was 8 years old, I started to gain a lot of weight, so for most of my
childhood and all of my adolescence and early adulthood, I was overweight.
Of course, being overweight I was not physically active at all. School phys.
ed. was a nightmare for me: I couldn't keep up with my peers, and physical
activity left me winded and aching. I grew up in a primarily blue collar
family and was expected to do strenuous physical labor with the rest of my
family, as we did a lot of that work ourselves instead of hiring it out. It
was always very difficult for me.
When I was about 21, I answered an ad looking for people with insomnia
problems for a medical study. I signed up and had to go through a physical
exam prior to my acceptance in the study. My heart murmur showed up on the
EKG, but the cardiologist who read it noticed something on the results that
caused him or her some concern and this person recommended that I see a
doctor. What this person saw to cause concern, I don't know. I saw my
primary physician, who then referred me to a cardiologist, and after testing
and evaluation, I was diagnosed with IHSS (idiopathic hypertrophic subaortic
stenosis, another name for HCM). By the way, I don't correlate my sleeping
problems then or since with HCM.
So, long story short, yes I believe this can be overlooked or, at the very
least, downplayed in some people. In my case, my symptoms were mistaken for
those associated with obesity: anytime I complained about how I felt,
EVERYONE would say the same thing: "It's because you're fat and out of
shape." Nobody ever thought to examine my cardiac functioning, and I will
always regret that. My life could have been different and perhaps a little
easier had we known.
There are cases of atheletes dying from sudden heart attacks with seemingly
no prior symptoms or indications of HCM. As I understand it, a person can
also be asymptomatic yet exhibit the physical indications of HCM.
>I am 23 yrs old and have been having
>horrible chest pain, shortness of breath with walking, sleep problems,
>and
>unable to lie down flat, for 2 months.
>Ive been to the ER, a heart
>doctor, and every other type of doctor and everyone says they cant find
>anything. Ive been told I have heart murmmers and paliptations, and the
>ECHO showed a slight thickening of the wall, but they said nothing is wrong
>with me. I did the stress test for the heart and it was normal. They
>now refuse to do anything else to help me and tell me its in my head. Ive
>resorted to doing my own investigating because I have to figure out
>whats wrong with me!
First of all, have you gotten a second opinion? If not, I think this should
be your first order of business. Also, having read all this, I am wondering
if perhaps you are experiencing anxiety attacks. I remember there being a
period of time a few short years ago when I was experiencing a LOT of
fatigue, racing heartbeats, arrythmia, etc. In my case, my medication needed
adjusting but I was also aggravating the situation by >worrying< and
obsessing about it, giving myself anxiety attacks. These symptoms you
describe sound very much to me like some sort of anxiety disorder. I'm not
saying you don't have a cardiac-related problem, but perhaps your worrying
about your health is aggravating the problem.
My advice: Keep a journal describing when your symptoms appear and note the
circumstances and times they happen. Then, find another doctor and get a
second opinion, bringing your journal with you for reference.
Good luck with all this. Please let me know how it all turns out, and I hope
you get some answers to and relief from your problems.
Tim
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: Possible HCM??]
Author: Anna (---.phnx.uswest.net)
Date: 01-04-02 00:51
Dear Paige,
You said you were diagnosed with this with only a slight thickening? Did you have a normal EKG? Did you have murmers and palpiatations? My doctor was so insistent that because it was only a slight thickening there is nothing wrong. What medication are you on?
Thank you for your reply.
Anna
Author: Anna (209.147.134.---)
Date: 12-14-01 03:53
I dont know how this forum works, I thought I posted this in the please help section but its not showing up. So if this is a repeat Im sorry. I am hoping someone can help me. I am 23 yrs old and have been having horrible chest pain, shortness of breath with walking, sleep problems, and unable to lie down flat, for 2 months. Ive been to the ER, a heart doctor, and every other type of doctor and everyone says they cant find anything. Ive been told I have heart murmmers and paliptations, and the ECHO showed a slight thickening of the wall, but they said nothing is wrong with me. I did the stress test for the heart and it was normal. Ive resorted to doing my own investigating because I have figure out whats wrong with me! I got fired for missing too much work, and I can barely stand up in the shower for 5 minutes when I get the horrible heavy feeling in my chest. I stumbled on this site and it seems like the symptoms are similar. Did anyone have trouble being diagnosed with this? Is it possible a doctor could have missed it? Thank you so much for any advice you have, I would really appreciate it!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: Possible HCM??]
Author: ira leichter (---.proxy.aol.com)
Date: 12-22-01 02:00
My doctors missed it almost 6 years ago. I had an abnormal EKG but no one followed up on it. A doctor here in LA finally found out what it was ..HCM
Go for an Echo stress test.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: Possible HCM??]
Author: Gary Ballard (---.proxy.aol.com)
Date: 12-24-01 11:19
I had similar symtoms when I was 29. I am now 35. I was diaognosed with non-obstuctive HCM. I began with restrictive activity and atenolol daily. The initial thickness of the septum was 18mm. now it is 23mm. I got more symtomatic with age. Because of family history and progressive thickening I had an ICD implanted last year. I take a coated aspirin daily with 100mg of atenolol and nitrolingual spray as needed for chest discomfort. Nitro is to be used sparingly because of HCM however; it does work at times. The best suggestion is to have your medical work done and follow their recommendations. Good luck!
Gary
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: Possible HCM??]
Author: cynthia (---.nas48.philadelphia1.pa.us.da.qwest.ne)
Date: 12-27-01 11:46
Yes, it is possible to have missed this. I was diagnosed at age 2, but my family at the time happened to live near a hospital that had experts in hcm/ihss. I see a local cardiologist now, but people on this board know well who the hcm/ihss experts in the world are. What you describe certainly does not sound normal!
Can anyone on this board help with the name of top cardios?
Cindy
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: Possible HCM??]
Author: BRL (---.sec.gov)
Date: 12-27-01 12:30
Anna,
My wife lost two sisters to what appears to have been HCM. The medical examiners ruled the causes of death as something else but other investigations quite a few years after the deaths revealed they both had slight thickening of the left ventricle. We later found out that her uncle who died in 1966 (which was ruled as a heart attack) definitely had hypertrophy. So it looks like doctors can definitely miss this thing.
Of course, it is a good sign that you have been examined by so many doctors and that they say there is nothing wrong with you. However, I am a confused by your message because it states that you have murmers and a slight thickening, but yet the doctors have found nothing wrong with you. Since your echo is showing a slight thickening, you might want to consult with an electrophysiologist who is well versed in HCM ( if you haven't already) to get some piece of mind.
Because HCM can be an inherited familial disease, we have been getting other family members examined (ekg, stress, echos, etc.) But my experience with all this is that many doctors, including some cardiologists, do not have much expertise in this area and you might want to find a specialist.
Best wishes.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: Possible HCM??]
Author: Kelly (---.wat.localline.com)
Date: 12-29-01 12:43
Anna, HOCM is more common in males but can CERTAINLY be found in women. It sounds as though HOCM could very well be the culprit, however, if it isn't, with these symptoms, there IS a culprit. I suggest that you seek a second, even third or fourth, opinion if necessary. I have been a cardiac nurse for over 12 years and have seen enough to know that DOCTORS ARE HUMAN!! Don't give up your search! It's great that you are doing your own research...
Kelly
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: Possible HCM??]
Author: paige (---.proxy.aol.com)
Date: 12-30-01 23:54
sounds like Hcm to me I was diagnosed w/ it last month and told exactlly what you were a slight thickening of the heart and put on meds they make me tired but they help and i wasnt feeling half of what you seem to be good luck and find a better Dr.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: Possible HCM??]
Author: beckley (---.dsl.mindspring.com)
Date: 01-01-02 16:28
Hi,
It sounds like you need a second opinion. Many people are certainly misdiagnosed or ignored all the time. It is highly unlikely that "a slight thickening" is normal.
Please get a second opinion right away --don't wait. There is clearly something wrong and the doctors you are seeing aren't qualified to find it.
Sarah
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: Possible HCM??]
Author: Tim (---.westgroup.com)
Date: 01-02-02 12:18
Anna --
I've emailed you already, but I'm posting most of my response here for the benefit of others. Sorry it's so long.
=-=-=-=-=-=-=-=-=-=
Please keep in mind that I'm approaching this from the point of view of
someone who has HCM and not that of someone who is a medical professional.
There seems to be a broad spectrum in the severity and nature of symptoms, so
my experience is not necessarily similar to another person's. I'm going to
respond to your questions in different order than what you wrote, so I can
address them more logically.
>I stumbled on this site and it seems like the
>symptoms are similar. Did you have trouble being diagnosed with this? Is
>it possible a doctor could have missed it?
I'm 33 years old, and the doctor noticed I had a heart murmur when I was
born. As many babies are born with murmurs, this usually isn't cause for
alarm. I don't know what medical practices are standard and usual these
days, but I believe my mom told me that she was told there was no reason to
be alarmed. I had my gallbladder removed at the age of 19, and no mention
was ever made to me about the presence of a murmur, as I am sure I was hooked
up to an EKG the entire time.
When I was 8 years old, I started to gain a lot of weight, so for most of my
childhood and all of my adolescence and early adulthood, I was overweight.
Of course, being overweight I was not physically active at all. School phys.
ed. was a nightmare for me: I couldn't keep up with my peers, and physical
activity left me winded and aching. I grew up in a primarily blue collar
family and was expected to do strenuous physical labor with the rest of my
family, as we did a lot of that work ourselves instead of hiring it out. It
was always very difficult for me.
When I was about 21, I answered an ad looking for people with insomnia
problems for a medical study. I signed up and had to go through a physical
exam prior to my acceptance in the study. My heart murmur showed up on the
EKG, but the cardiologist who read it noticed something on the results that
caused him or her some concern and this person recommended that I see a
doctor. What this person saw to cause concern, I don't know. I saw my
primary physician, who then referred me to a cardiologist, and after testing
and evaluation, I was diagnosed with IHSS (idiopathic hypertrophic subaortic
stenosis, another name for HCM). By the way, I don't correlate my sleeping
problems then or since with HCM.
So, long story short, yes I believe this can be overlooked or, at the very
least, downplayed in some people. In my case, my symptoms were mistaken for
those associated with obesity: anytime I complained about how I felt,
EVERYONE would say the same thing: "It's because you're fat and out of
shape." Nobody ever thought to examine my cardiac functioning, and I will
always regret that. My life could have been different and perhaps a little
easier had we known.
There are cases of atheletes dying from sudden heart attacks with seemingly
no prior symptoms or indications of HCM. As I understand it, a person can
also be asymptomatic yet exhibit the physical indications of HCM.
>I am 23 yrs old and have been having
>horrible chest pain, shortness of breath with walking, sleep problems,
>and
>unable to lie down flat, for 2 months.
>Ive been to the ER, a heart
>doctor, and every other type of doctor and everyone says they cant find
>anything. Ive been told I have heart murmmers and paliptations, and the
>ECHO showed a slight thickening of the wall, but they said nothing is wrong
>with me. I did the stress test for the heart and it was normal. They
>now refuse to do anything else to help me and tell me its in my head. Ive
>resorted to doing my own investigating because I have to figure out
>whats wrong with me!
First of all, have you gotten a second opinion? If not, I think this should
be your first order of business. Also, having read all this, I am wondering
if perhaps you are experiencing anxiety attacks. I remember there being a
period of time a few short years ago when I was experiencing a LOT of
fatigue, racing heartbeats, arrythmia, etc. In my case, my medication needed
adjusting but I was also aggravating the situation by >worrying< and
obsessing about it, giving myself anxiety attacks. These symptoms you
describe sound very much to me like some sort of anxiety disorder. I'm not
saying you don't have a cardiac-related problem, but perhaps your worrying
about your health is aggravating the problem.
My advice: Keep a journal describing when your symptoms appear and note the
circumstances and times they happen. Then, find another doctor and get a
second opinion, bringing your journal with you for reference.
Good luck with all this. Please let me know how it all turns out, and I hope
you get some answers to and relief from your problems.
Tim
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: Possible HCM??]
Author: Anna (---.phnx.uswest.net)
Date: 01-04-02 00:51
Dear Paige,
You said you were diagnosed with this with only a slight thickening? Did you have a normal EKG? Did you have murmers and palpiatations? My doctor was so insistent that because it was only a slight thickening there is nothing wrong. What medication are you on?
Thank you for your reply.
Anna