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Diagnosed with both multiple myeloma and amyloidosis
Blood Cancers & Disorders | Last Active: Jan 16 8:52pm | Replies (20)Comment receiving replies
I would love to connect with someone who has MM and amyloidosis like I do just to exchange stories on what we have experienced. If anyone does and sees this, please reach out. I feel so alone in this journey. Thank you!!!!!
Replies to "I would love to connect with someone who has MM and amyloidosis like I do just..."
Good morning. Hoping this message finds you well. I found your message and wanted to share my husband’s experience. He was diagnosed with Right Heart Failure on Oct 2022 after going through lots of symptoms from dizziness to palpitations and weakness all over with shortness of breath. The cardiologists performed a heart cath & did other tests resulting also in stiffness in his heart walls making it difficult to pump normally. All other tests were negative. They put him in Furosemide 40mg. After this he visited the ER 6 times with same symptoms. Again every specialist who treated him said the sale thing: “All is normal but we don’t know what is causing you these symptoms”. They were frustrated so did we. I took him to Mayo Clinic in Jacksonville on May 26. The cardiologist did special tests: resulting in Cardiac Amyloidosis. Did a Genetic testing (waiting for results). Now back in Virginia he will have a bone marrow biopsy to confirm which type of Amyloidosis he has or if he has another type of amyloid condition. I will keep your contact if you want to share my husband’s outcome. What meds are you taking? Are you feeling better? Wishing you healing. Regards, Vivian
PS: My husband Bill gave me authorization to post his symptoms & results. Maybe we can help out other people who are going through so much.
By the way. You are not alone in this. 😔We are here.
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I think I found the Connection for you!! It’s an older conversation and I’m not sure if @beckyoutlaw1115 is still active in the group but members are active. But @dazlin and @oldkarl current and hopefully they’ll be able to share some stories, ideas and support for you so you don’t feel alone in this double whammy life tossed at you.
Now that I look back through prior conversations, I think these links may have been given to you before in a previous post but just in case you haven’t seen them, they’re posted below.
https://connect.mayoclinic.org/discussion/treatment-for-amyloidosis-and-multiple-mylemoa/https://connect.mayoclinic.org/discussion/what-a-shocker/This discussion regarding Amyloidosis with @countrygirlusa might be of interest to you. I know she had a bone marrow transplant to help put her into an enduring remission.
https://connect.mayoclinic.org/comment/824887/
We’ll keep looking and hopefully someone with your similar story will be able to jump into the conversation. You’re not alone here… ☺️