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Amyloidosis and HCM research findings

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  • Amyloidosis and HCM research findings

    Pls. read following carefully and if anyone has any feedback or comments, including those of any HCM specialists, pls. respond to this posting:

    The medical article we researched had the topic of HCM and amyloidosis in the same article but they were described in separate sections; However, another article (Vogelgesang, S, 1994. The many guises of amyloidosis, Postgraduate Med 96: 119-127), states that "Amyloidosis occurs in many diseases and can be idiopathic (of unknown cause). It is usually a systemic disease with variable presentations. The diagnosis should be suspected in patients with unexplained proteinuria, cardiomyopathy, congestive heart failure, peripheral neuropathy, carpal tunnel syndrome, macroglossia, or hepatosplenomegaly." However, the authors describe cardiac manifestations of amyloidosis and it does not describe amyloidosis as a manifestation itself of cardiac issues like HCM. The question then arises how does a person with HCM get amyloidosis - a coincidence or a separate disease process????????

    Renal disease comes with most types of amyloidosis. Gastrointestinal involvement results in 50 percent of patients with amyloidosis. I read an article at Medscape of a patient with amyloidosis and gastrointestinal bleeding which can be accessed by doing a search on these parameters.

    Amyloidosis involves a protein called amyloid which deposits itself into one or more organs and interferes with the organ's function. There are various amyloid proteins but secondary amyloidosis involves specifically deposits of the amyloid A protein and it occurs in association with other disorders. These other disorders include autoimmune diseases, infections, malignant diseases, other in Table 3 of the above citation. The "Other" catagory lists drug abuse, the closest association to HCM I can think of in that HCM is treated with a variey of heart medications but this is only speculation and something to consider??? On the other hand, "primary amyloidosis occurs in absence of any associated infectious, inflammatory, or hereditary disease or nonmyeloma neoplasm."

    Clinical Manifestations (Table 1 of Vogelgesang, S, 1994. The many guises of amyloidosis, Postgraduate Med 96: 119-127):

    Cardiac
    congestive heart failure
    restrictive cardiomyopathy
    arrhythmias
    angina

    Neurologic
    sensory neuropathy
    autonomic neuropathy
    carpal tunnel syndrome

    Renal
    proteinuria
    nephrotic syndrome
    renal vein thrombosis

    Gastrointestinal
    diarrhea
    malabsorption
    ulceration, etc.

    The other clinical manifestations include cutaneous (skin), musculoskeletal, pulmonary and other (splenomegaly).

    Laura Y.
    HCM & diastolic/systolic HF (burn-out HCM) DX in 2010
    Brother 34, sister 45, & mother 73 passed away from HCM burn-out/CHF/DCM
    Sister @ 41 got heart transplant on Valentine's day 2002
    Oldest sister, diagnosed with HCM in 2010
    only niece cleared by genetic testing; son not genetically tested yet
    Suspected HCM in maternal grandmother (d. 39), 2nd cousin (d. 33),
    maternal grand aunt (d. 51), & maternal great grandmother (d. 50s); with hrt. conditions/hrt. surgery/kidney d.

  • #2
    Re: Amyloidosis and HCM research findings

    Laura,

    I don't know a lot, but a couple of years ago my cardiologist asked the gastroenterologist to send a specimen to check for amyloidosis because I had some of the symptoms associated with amyloidosis as well as HCM. (It turned out I don't have amyloidosis.)

    My understanding was that the amyloidosis can cause cardiac signs & symptoms which are mistaken for HCM. In this situation it would be important to treat the amyloidosis to improve the HCM symptoms.

    I do not believe HCM causes or is associated with the development of amyloidosis.

    I hope this helps,
    Pat

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    • #3
      Re: Amyloidosis and HCM research findings

      I searched just now for amyloid to see if anyone had ever discussed it and found this very old post from before my HCM diagnosis. I just learned that I have amyloidosis that seems to be attacking my nerves. When the doctor (not a cardiologist, but the research head of a medical school and an expert in neuropathy) listened to my heart, he said he heard a "click" that he thought was unrelated to HCM and he was concerned that either the neuroendocrine tumors had returned and were attacking my heart or that the amyloid was affecting my heart. He asked if I had had a heart biopsy at the time of HCM diagnosis, but I had not. Does anyone have any more recent information on any relationship between amyloidosis and HCM? Thanks!

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      • #4
        Re: Amyloidosis and HCM research findings

        I believe that there are at least a few of our members that were eventually found to have amyloidosis and not HCM.
        Daughter of Father with HCM
        Diagnosed with HCM 1999.
        Full term pregnancy - Son born 11/01
        ICD implanted 2/03; generator replaced 2/2005 and 2/2012
        Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.

        Comment


        • #5
          Re: Amyloidosis and HCM research findings

          I don't know much about this, but I have mitral valve prolapse. Sometimes my doctor is able to hear a click in my heart as well. Your case might certainly be amyloidosis, but that's my personal experience with clicks.
          Reenie

          ****************
          Husband has HCM.
          3 kids - ages 23, 21, & 19. All presently clear of HCM.

          Comment


          • #6
            Re: Amyloidosis and HCM research findings

            Thanks. The amyloidosis diagnosis was not necessarily related to the click. The doctor found high levels of amyloid in my serum and found that my serum attacks and kills nerve cells very quickly. Unfortunately, I would much prefer to have HCM over amyloidosis, which is generally terminal quite quickly. However, sometimes it can be caused by a long-standing infection or inflammation, in which case finding and treating the cause can stop the progression. The question that the doctor us working on is more along the lines of whether I have both amyloidosis and HCM and, possibly, also a return of the cancer. I was sent to this doctor, who literally wrote the books on NET cancer, because two other doctors described him to me as "the real life Dr. House."

            Comment


            • #7
              Re: Amyloidosis and HCM research findings

              I hope you get some answers soon. Please share with us when you learn something.
              Reenie

              ****************
              Husband has HCM.
              3 kids - ages 23, 21, & 19. All presently clear of HCM.

              Comment


              • #8
                Re: Amyloidosis and HCM research findings

                Originally posted by Laoshur View Post
                I searched just now for amyloid to see if anyone had ever discussed it and found this very old post from before my HCM diagnosis. I just learned that I have amyloidosis that seems to be attacking my nerves. When the doctor (not a cardiologist, but the research head of a medical school and an expert in neuropathy) listened to my heart, he said he heard a "click" that he thought was unrelated to HCM and he was concerned that either the neuroendocrine tumors had returned and were attacking my heart or that the amyloid was affecting my heart. He asked if I had had a heart biopsy at the time of HCM diagnosis, but I had not. Does anyone have any more recent information on any relationship between amyloidosis and HCM? Thanks!
                Laoshur, you and your family are in my prayers. There is LOTS of good, up-to-date information through this website:

                http://www.amyloidosissupport.com/

                The very best COE's in the US for amyloidosis are Mayo in Rochester and Boston University. There are different versions of amyloidosis and there are treatments. Hugs to you!

                Comment


                • #9
                  Re: Amyloidosis and HCM research findings

                  Thanks!
                  The tests require a month to come back, so they should be back this week. But the doctor is traveling (he is head of research for a medical school, so doesn't see many patients). Before he returns, I am going to China for most of May. Then when I get back, he will be gone, so I will not get the results until June 19. Some of my blood work strongly indicated the return of the cancer and the amyloid protein was definitely identified, so I have a lot of information to wait for. But my hope is in God, not in even a great doctor or medical tests or anything else. So, in spite of all the heavy stuff, I am looking forward to our trip with great anticipation.

                  Comment


                  • #10
                    Re: Amyloidosis and HCM research findings

                    I hope you have a great time in China and that you get good news when you return.
                    Reenie

                    ****************
                    Husband has HCM.
                    3 kids - ages 23, 21, & 19. All presently clear of HCM.

                    Comment


                    • #11
                      Re: Amyloidosis and HCM research findings

                      Apparently I get to enjoy the double dose, at least for the moment. An echo indicated that the heart problems are not amyloid related, but are typical of HCM, but the blood and urine tests still show the protein. The doc repeated these tests and said that the next step will be a bone marrow biopsy, assuming that the tests come back positive again.

                      Comment


                      • #12
                        Re: Amyloidosis and HCM research findings

                        Still waiting for clarity. But the indications are now that HCM is the heart problem, the neuropathy is at least partially due to B-12 deficiency, and who knows about the abnormal protein? We have discussed multiple myeloma, amyloidosis, MGUS (seems to be a real diagnosis but the US stands for "of unknown significance"), and lots more. The good news is that the B-12 seems to really be helping. I can walk somewhat straight, have more endurance, and have less pain.

                        Comment


                        • #13
                          Re: Amyloidosis and HCM research findings

                          Laoshur,

                          First, it is great to hear from you again and I am very happy to hear that correcting the B12 deficiency is helping. You may have read previous posts of mine regarding this matter, but several years back I was diagnosed with a severe B12 deficiency, and I saw almost immediate improvements across the board once I started the high dosage B12 sublinguals. At one point my doctors thought I had MS due to all of the neurological problems I was having, but they all resolved after correcting the deficiency.

                          As an aside, B12 deficiency is quite common nowadays and I can't for the life of me understand why more doctors do not test for this.

                          Jim
                          "Some days you're the dog... some days you're the hydrant."

                          Comment


                          • #14
                            Re: Amyloidosis and HCM research findings

                            I cannot speak to amyloidosis but I can as far as MGUS is concerned. My understanding is that although over 95% of the population has this abnormal protein it is not found unless a special blood test is performed. Mine was found by a rheumatologist looking for a reason why my leg was the way it is.

                            I have graduated from having tests every 3 months to once a year - thankfully my numbers have never changed in the last 10 years and bone scans have shown no lesions. If it is shown that you do have MGUS there is a test that will definitively put you into a risk classification for MM. I have been told that the protein that clones itself is more than likely something you are born with. By the way, there are 3 proteins that could be involved but I do not remember the designations or the order of importance.

                            Comment


                            • #15
                              Re: Amyloidosis and HCM research findings

                              I am glad to hear that you are feeling somewhat better, especially less pain. I do hope the improvements continue!

                              Comment

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