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  • HCM & Fibromyalgia

    [HCM & Fibromyalgia]

    Author: Marlene (---.ip.theriver.com)

    Date: 08-11-02 11:37

    Hi everyone! I'm a newbie here, but was dx'd in 1991. I just got notification that my HMO (BC/BS of AZ) ok'd me to see Dr. Nishimura @ Mayo in Rochester, MN. My appointment is 8/14 so will be leaving Tues. My concern is that alot of the symptoms I have are actually related to Fibromyalgia and Hypoglycemia and that my HCM is not all that bad. I'm a little embarrassed to see the doc. I've been told all my life that my symptoms were in my head & I don't know if I can take hearing this again! Even tho I know now that FMS is real, I'm not sure the doc does. I have felt so bad since at least age 9 (49, now). Exercise has always been so difficult - it hurts in my throat to just walk around now and I've had to give up singing this past year. I have an AICD, but that has not helped as much as I had hoped it would. Is there anyone out there that has FMS that I could talk to?

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    [Re: HCM & Fibromyalgia]

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

    Date: 08-11-02 12:27

    Dear Marlene

    Welcome to the board. Well, if Dr. Nishimura is seeing you personally, I can' t imagine that you have anything to worry about. I've only spoken to him on the phone, went I went to Mayo, I saw Dr. Klarich and Dr. Somone whose name I don't remember.

    The Mayo is a different kind of medical experience. I found that everyone was very caring, considerate, and compassionate. If they truly believe that the symptoms you are having now are not HCM, it is not like they are going to kick you out of the office and send you home. I can't imagine that they wouldn't hook you up with the right people to see at the Mayo for your other health issues.

    Is yur AICD a pacemaker, too? I ask because your standard ICD doesn't pace and is not designed to reduce your symptoms on a day to day basis but to shock the heart back to normal when it gets out of line. So I'm curious as to what you mean when you say you are dissapointed in the AICD.

    I don't know that you will find many FMS patients here, but it is possible. Have you looked for an FMS board on the net? iVillage.com may have one.

    take care and let us know how the Mayo visit goes,

    Sarah

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    [Re: HCM & Fibromyalgia]

    Author: Marlene (---.ip.theriver.com)

    Date: 08-11-02 14:31

    Hi Sara - thanks for responding so soon. Yes, my AICD is a pacemaker, too. In fact, because I was not doing real well with it, the doc took me back in and did a catheter ablation (cauterized my AV node) so that now I am pacemaker-dependent. Lisa said she thought that was a really idiotic thing to do (NOT her words). Now it is the doc's opinion I should have a myectomy & wanted me to have it done in AZ. After much trying to reason with him & him checking around, he finally came to the conclusion that there is no one qualified to do the surgery here & so helped me to get pre-authorization with my insurance to see Dr. N. I am hooked up with an on-line Fibromyalgia support group, but have gotten no response to my inquires about anyone having HCM also. I know being on a strict hypoglycemic diet has helped my symptoms greatly. I used to suffer so greatly after eating dinner in the evenings. I suffered deep achy chest pain & it would hurt in both arms - feeling unable to lift my arms or even walk around. I had the same symptoms that I do when trying to walk up a slight incline: It hurts in my throat & I feel out-of-breath. I had suspected I had hypoglycemia (or at least a carbohydrate intolerance) since I was 21 years old. Then, I was so skinny & always trying to gain weight, I would drink a milkshake for lunch everyday. And every day, afterwards, would suffer with palpitations and feel so druggy tired that I would drink tons of coffee trying to stay awake to perform my job. After finally being diagnosed with HCM, I just assumed that was it all along. Sure gets complicated, but I sure would like to find out if there are others like me out there! HELP!

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    [Re: HCM & Fibromyalgia]

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

    Date: 08-11-02 16:11

    Dear Marlene

    Well, hopefully you will find others with FMS and HCM, but in the mean time, I'm glad you are going to go to the Mayo. It is too bad about the ablation.

    hang in there,

    Sarah

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

    [Re: HCM & Fibromyalgia]

    Author: Jerry Salzman (---.indy.rr.com)

    Date: 08-11-02 19:46

    Marlene,

    You said that your doctor looked around and couldn't find anyone in AZ to do the myectomy? No one does it, or did you convince your doc that the surgeons did not have enough experience. I am in the same boat right now, so any help in how to convince the HMO to let me go to Cleveland would help.

    Thanks

    Jerry

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    [Re: HCM & Fibromyalgia]

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

    Date: 08-14-02 08:40

    Marlene,

    Ok just for the record I believe my words were..I think they have been over aggressive...however your terms do seem to fit some of what I was feeling after you told me how they treated you!

    You are going to be treated by a true HCM specialist...one of the worlds best. YOu will have a complete evaluation and all of your symptoms will be looked at. If they feel there is something to be done for you, they will advise you of your options. I suspect, from a great deal of experience, you will find a possitive experience and should have many questions answered.

    I would suggest that you contact mayo (TODAY..as you have an appointment for the 14th) and make sure they know your other diagnosis as they may wish to have a consult from someone who specializes in Fibromyalgia (sp) to give an opinion as well.

    BEST WISHES!!

    Lisa

    PS I am glad the letter seemed to work with your HMO!
    NOTE: This is a post from the previous forum message board.

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