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  • What symptoms should I have?

    [What symptoms should I have?]

    Author: Edlyn (---.tstonramp.com)

    Date: 10-23-02 01:06

    I have just recently discovered this site (thanks to Google!) and am so confused about what I have been diagnosed with that I had to write to find out if others have had similar experiences with other cardiologists. I started having cardiac symptoms in the mid 1990s (sob, pain, fatique, palpitations) and in 1998 had a full cardiac workup (I was told at the time that everything was fine, but I recently got those records which were noted to be abnormal). At the time, I was sent for cardiac rehab which I gave up after a few weeks because it made me feel worse. Recently, I went to a new internist who really listened to the symptoms I was reporting and immediately suspected IHSS. He sent me to a different cardiologist who performed an echo and confirmed IHSS with mild obstruction. The second echo, a stress echo ended up showing a profound obstruction with a 196mm Hg. gradient during peak exercise. The cardiologist didn't seem upset by this as there was no evidence of ischemia and started me on a trial run of Norpace. He also told me not to worry since this condition wasn't too dangerous for middle aged folk (I just turned 49 yesterday). The Norpace seemed to help somewhat the first week I was on it, but as I went up on the dosage and changed to generic, serious side effects began and the overall effect reversed itself. My cardiologist keeps telling me that my symptoms are not IHSS as the resting obstruction is mild, my septum is only enlarged to 1.7, and the high gradient could have a margin of error. Today I was started on a Beta-Blocker which he believes is not going to help me much as he now thinks this is all related to deconditioning. Everytime I see him I get more depressed, angry and confused as all the literature I have read since I was given this diagnosis, connects my symptoms with the disorder but he doesn't agree since the criteria doesn't exactly fit. I don't understand his reasoning since what I am reading on this site seems to fit with how I feel. I am getting worse by the week and can no longer make it up one flight of stairs without severe tachycardia (my husband is shocked that he can feel with his hand, how hard the murmer gushes), terrible shortness of breath with chest pain and constriction, lightheadedness and often nausea). In short, I feel horrible and handicapped and nothing like the athletic person I used to be (even shopping is torture). I really find it hard to believe that these symptoms, which also include weakness and fatigue (and a couple of scary near fainting episodes) and the fact that I am rapidly going downhill, is due to deconditioning. I can't figure out how to exercise anyways since I feel terrible for days afterward (even benign exercise like walking my dog is more than I can handle). I just sent off all my records to Dr. Lever in Cleveland and am wondering if my wanting to see a specialist has insulted my cardiologist. Has anyone else had similar experiences or is this just me......? Thanks for letting me ramble, I feel particularly bad today since I just came from another cardiology appointment..........

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    [Re: What symptoms should I have?]

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

    Date: 10-23-02 02:08

    Dear Edlyn,

    If seeking a second opinion "insults" your cardiologist, he is not worth seeing. Good doctors respect expert opinions and welcome them. If you don't get enthusiastic support on this, then you should find another doctor.

    Everything you are feeling is normal for HCM and your experience is sadly the norm for most people when they are first diagnosed and before they find their way to a specialist.

    It is shocking that the abnormal resulsts were ignored earlier, but I've seen that story here before, too. As for your symptoms being due to "deconditioning"? Um, no. Sorry, no. Your doctor doesn't understand that HCM varies widely, doesn't know what the symptoms are and is not treating you in the manner you deserve.

    As for your septum ----1.7 is almost double what the outside normal is (1.0), so I don't know what is so mild about that. It isn't in a crisis zone, but it is not like a scant 1.2 or 1.3. It sounds like you have someone who goes by the book and not by the patient and he is reading an old book!

    Norpace ---it is my understanding that the generic is actually a tiny bit different from the brand, so this could explain the problem. Also, norpace doesn't usually reduce your heart rate, just palpitations. In fact, most people take Norpace and a beta-blocker togeher. Typically it is the beta-blocker that is given first and a lot of doctors make you stay in the hospital while they start you on Norpace in case you have a reaction to it. It doesn't sound like that happened.

    Which beta-blocker are you on? If it is Inderal (propanolol) --that is the yuckiest, most side-effecty one and I suggest you ask for something a little newer like nadolol or kerlone or just about anything else.

    Hang in there ----seeing a specialist will make a world of difference and you are not alone. We all know how hard and scary and just plain miserable this can be sometimes, but the right treatment plan is on the horizon for you. Keep us posted.

    Sarah

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: What symptoms should I have?]

    Author: Glen (65.247.42.---)

    Date: 10-23-02 08:34

    Hi Edlyn, just the fact that this cardiologist refers to the condition as IHSS says he is not up to date. That is an old name and is replaced by HCM and HOCM.

    Irregardless of how your cardiologist feels, the main thing is your health and I don't think you are getting the best care or advice from him.

    I was told 1.1 was normal for me, mine is 2.1, so 1.7 is not huge for HCM, but significant enough.

    Getting an HCM specialist involved was a good move on your part.

    I saw 4 cardilogist before I finally got to an HCM specialist and they all said basically the same thing as yours and poo pooed my symptoms as not much to worry about.

    We know different now.

    Your on the right trail by going to the HCM specialist.

    Good Luck and Stay Well

    Glen

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: What symptoms should I have?]

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

    Date: 10-23-02 08:34

    Dear Edlyn,

    Yep...been there, done that. I'm sorry to hear that you are not feeling well, and of your 'challenges' with treatment - but can certainly empathize with your frustration.

    My husband was diagnosed also at age 49 (just 6 months ago). We heard similar things from not one, but two, different cardiologists. They would say things like, "oh, what you have is mild" (the report states that his hypertrophy is severe) and the last doctor hubby saw even went so far as to state" I'm not convinced that your fatigue is caused by your heart." DUH!! It was very disheartining, frustrating and confusing to have his complaints/symptoms fall on deaf ears.

    In my opinion, if it's not a clogged artery or a heart attack, they just don't know what they are doing...nor do they want to admit it.

    Like you, my hubby is very symptomatic and suffers with all those 'classic' symptoms typical of HCM. Yes, a simple task like washing the car just wears him out.

    If it weren't for this web site and the guidance and support from Lisa/Sarah we would have been totally lost. Don't be afraid of 'insulting' this doctor...when my husband asked the last cardiologist his opinion about seeing a specialist at Cleveland Clinic, he practically laughed at us...(I'll be a lady here, and won't verbalize what I was thinking at the time!)

    Hubby goes to see Dr. Lever at CC in November. I feel that he will finally receive some answers, and hopefully treatment to improve his quality of life.

    Best of luck to you -

    Karla

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: What symptoms should I have?]

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

    Date: 10-23-02 08:43

    ONE piece of advice...get to a specialist.

    If you need help finding one...call the HCMA.

    I do not mean to short but it really is that simple. You can feel better...all of you who have taken this advice over the past few years feel free to chime in...

    Remember this is a life long disease...I am not suggesting things will be perfect, but I really think they can be better!

    Lisa

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: What symptoms should I have?]

    Author: Nancy Sarvis (---.access.naxs.com)

    Date: 10-23-02 09:41

    Hello Edlyn, I'm glad you found this message board. If you read through the board you'll probably find your story repeated many times by many patients. I'm 42 yrs old with a very similar story that involves more cardiologists than you can count on one hand. The best move I made was to see Dr. Lever in Cleveland. He is very up to date on this disease. He is helpful and personable and knows his stuff. You will be in wonderful hands with him "caring" for you. As for what symptoms you should have, as can read through the board, you'll probably find every one of your symptoms and then some. Just because the doctor you saw does not see them as credible, you and only you, know how you feel. Do not hesitate to tell them all to Dr. Lever. Hang in there. There is a good chance that under his care you will find treatment options that can help you feel a whole lot better.God Bless You.

    Nancy

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: What symptoms should I have?]

    Author: Edlyn (---.tstonramp.com)

    Date: 10-23-02 22:48

    What a great group you all are- thank you so much! I can't begin to express my gratitude for all your support, it really goes a long way not to feel alone with these bothersome symptoms!!! No, Sarah, I was not hospitalized to start on the Norpace which I am now off of completely. I am now on 25mg of Toprol -XR (metoprolol) once a day, which I started yesterday. My internist is very excited and supportive of my seeking a second opinion, particularly from one of the top specialists in the field (he also mentioned Dr. Maron in Minn., but he didn't call back, Dr. Lever did), whereas my cardiologist questioned why I wanted to go to Cleveland in the first place (he didn't think they were "it" for this type of condition) . However, I already have a favorable impression of the clinic, their willingness to get me in asap and that I will be able to fully discuss what I am going through without feeling that I am having to convince someone of the reality of what I am experiencing. I will keep everyone posted of my progress and what develops!

    Edlyn

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: What symptoms should I have?]

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

    Date: 10-23-02 23:19

    Dear Edlyn

    You are welcome. Cleveland, Minneapolis Heart, Mayo, St. Lukes, Tufts-NEMC, and um --someone else? Ack, brain freeze are the top centers --NOT in any order of betterness, just the order they came out of my fingertips.

    No worries, keep us posted and welcome to the club we love to hate.

    S
    NOTE: This is a post from the previous forum message board.

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