[Confused and concerned - again!]

Author: karla (---.proxy.aol.com)

Date: 01-05-03 05:25

Hi, All

I haven't posted on the board for awhile, but I have been reading and keeping up with what's been happening with everyone.

My last post was to report on my husband Tom's visit to Dr. Lever in Cleveland in November. Dr. Lever told hubby that his HCM is "Yamaguchi syndrome" and that his HCM is apical - just at the tip of his heart. After the usual battery of tests, he concluded that Tom's heart was functioning just fine - which was great news!

Tom told Dr. Lever about his frequent chest 'heavyness' , "pain"- in his shoulder & down his arm and his fatigue. Dr. Lever told him that he did not think that was caused by his heart. Tom's meds were changed to help the fatigue.

The change in meds do seem to alleviate his fatigue somewhat. However, the chest heavyness and pain symptoms continue along with sometimes not being able to get his breath .. and he continues to not feel well. (he has suffered from anxiety and says this is a different type of pain) From all I have read on these boards, these symptoms are common with those with HCM. With all due respect to Dr. Lever , we were just surprised that these symptoms weren't validated by him either.

Tom is somewhat depressed and frustrated and I'm confused and concerned (again!) Yes, we now have an accurate diagnosis, but that's about it.....if these symptoms aren't 'heart-related' - which is the only thing that seems to fit - but we've been told not, where do we go from here? Is this just part of living with the enigma of this disease or should we contact Dr. Lever again?? Do we just need to accept that this is the way it's gonna be...good days/bad days for him or did somebody miss something?

As always, looking to the boards for advice...thanks for allowing me to vent ..



[Re: Confused and concerned - again!]

Author: Robert Hartwell (---.focal5.interaccess.com)

Date: 01-05-03 06:08


I don't think that either of you should accept that "this is the way it's gonna be" especially if you have not discovered what the cause is (if it's not HCM). Life is too short for that. Please contact Dr. Lever again in Cleveland and tell him that your husbands symptoms are still bad. Reconfirm again the diagnosis from an HCM standpoint, and then see if Dr. Lever can suggest another course of action if he can no longer help you. Perhaps another Dr. in Cleveland can be of assistance.

Good Luck

Bob Hartwell


[Re: Confused and concerned - again!]

Author: Sarah B--Board Moderator (---.client.attbi.com)

Date: 01-05-03 06:12

Dear Karla,

Bob is absolutley right. Dr. Lever is _human_ too --so let him know that what is going on and if he is adamant about not HCM-related than ask for suggestions on where to look for anwers.

Chest pain used to be thought "not an HCM" symptom, but we now know it is. Hubby should track when the pain happens to rule out any gastroinstential connection, eg before dinner, after dinner, how long after, after certain foods, etc.



[Re: Confused and concerned - again!]

Author: karla (---.proxy.aol.com)

Date: 01-06-03 05:02

Thanks all for input - as always, good sound advice. Yes, we do 'track' the pain...and have considered it being gastroinstestinal related, however, that doesn't seem to be the case.

Sarah, will take your advice and contact Dr. Lever. You are right - even experts are 'human'.

Robert - you are right - "life is too short" ....somebody's missed something, or it's yet to be discovered.

Thanks again!



[Re: Confused and concerned - again!]

Author: Joe (63.99.111.---)

Date: 01-08-03 08:26


I was diagnosed with HCM almost 12 years ago durring a routie exam, I was only 22 years old at the time. I never had a symptom and never have. All doctors say is to "keep an eye on it" so much that does. I go evey year for ECG and EKG and they are always the same. I have tought about taking drugs as a profilatic or seeking some other "answer" and the only thing I know is that I pay through the nose for life insurance.

What I think I am trying to say is that I have never let this change my life, I work out I play sprots, I have two beautiful young daughters, I ride a motorcycle. I am not sure exactly what your case is and there may be much more involved, but it sounds like the stress about what to do for something that you can't do anything about can cause a lot of these symptoms.

Maybe trying something to relax like lite workouts, walking, yoga, anything that relives stress would help.

Just a thought.

Wishing you the best of luck!



[Re: Confused and concerned - again!]

Author: Lisa Salberg (---.dyn.optonline.net)

Date: 01-08-03 08:36

Karla -

Call Dr. Lever and talk about the situation with him...your in good hands at Cleveland let them care for him...while most people with apical do not have the symptoms your husband does...it does not mean it is not related...work with the docs, they need time to access each case. Sometimes the answers do not come right away, it takes time.

All the best,



[Re: Confused and concerned - again!]

Author: Susan (---.ceg.com)

Date: 01-08-03 11:44


I know exactly the pain your hubby is describing. That is how I began to notice that something was really wrong with me!!! My docs here told me I had Mitral Valve Prolapse ( due to a heart murmur) for about 8 years. Then when I turned about 48 yrs. old I noticed that for no reason whatsoever I would get this tightness in my chest ( like I had been running in real cold weather) and it would radiate all the way down my left arm and sometimes into my neck. So for two more years after being told that it was not my heart I finally went to another cardio and just told him he HAD to find out what was causing this! Finally he actually looked at my echo while they were doing it and bingo HOCM. The tightness now turns into chest pain and still goes down my arm but at least I know what it is now. It can last anywhere from 5 minutes to 40 minutes. I just sit down or lie down and I found the most important thing is I try to remain calm and tell myself it will go away in a little while and sure enough it does. I go to Dr. Asher at Cleveland and when I first saw him I typed every symptom I would have in one day ( sometimes it was like 3-4 different ones a day) and told him I thought I was going crazy or something and he said every symptom I had was a symptom of HOCM. Now I am on 75mg of atenolol a day and I have to say the symptoms are much less but still sometimes I get the chest and arm pain for no reason at all. Hope this helps but I had to tell you because I know exactly what your husband is going through. You even begin to feel like it is all in your head and you get angry because you can't stop it and no one else seems to know what it is. Sorry for such a long post.