Diagnosed with both multiple myeloma and amyloidosis

I was diagnosed in March and yes I am in treatment.

Ok thank you for replying. My question is then. Has anyone had a history of easily fractured bones that were slow healing or not healing at all....years before diagnosis of either one?

Hola, mi esposo también fue diagnosticado con Mieloma Múltiple, ya está con tratamiento que comenzó con sueros citostáticos, vamos por el segundo, su anemia ha mejorado un poco y otros síntomas también. Tampoco nos han informado muy bien de la enfermedad, ni el grado en la que se encuentra, solo que es Mieloma Múltiple. Sigue conectado al grupo, para nosotros ha sido como brisa fresca. Un abrazo a todos!😌

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I’m trying to connect with someone who not only has multiple myeloma but also amyloidosis to see what treatment they are doing, symptoms, etc.

Good morning. It’s a relief to hear your husband is improving with his treatment. I know you were very worried when he was first diagnosed.
It’s so frustrating not to get information from you husband’s doctors but I’m so glad you’re here on Connect with us. We have a number of members with Multiple Myeloma who are more than happy to share information with you and offer that much needed support. It helps to know you’re not alone. Hugs to you and your husband. ☺️

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!!!!!

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.

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… ☺️

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.

Is there anyone here with a confirmed diagnosis of multiple myeloma and any other blood disorder(s)?

I initially was diagnosed with CML. Five years later I developed multiple myeloma. I am looking for others that have developed two or more blood disorders