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@kelseydm

Hi @jan52241. Welcome to Connect! I’m sorry to hear you have felt alone in this diagnosis thus far, but so glad that you found our community.

We hosted a webinar last June called “Amyloidosis – What Patients Need to Know” https://connect.mayoclinic.org/discussion/amyloidosis-what-patients-need-to-know. In this webinar Mayo Clinic cardiologist Martha Grogan, MD, and hematologist Prashant Kapoor, MD, provided an overview of amyloidosis, including tests and evaluations, treatment options and how to manage your symptoms.

I’d like to introduce you to @gaetanche @mvpdda and @tmousetis who also have amyloidosis. Hopefully they will join this discussion thread and share their experiences about treatment and managing symptoms.

You may also want to look at this thread on AL Amyloidosis: https://connect.mayoclinic.org/discussion/diagnosed-with-al-amyloidosis-would-like-to-hear-from-someone-about-what/ and this one on neuropathy: https://connect.mayoclinic.org/discussion/neuropathy-pain-in-my-left-foot-and-lower-left-legs/.

In the meantime, can you tell us a bit more about yourself. What, if any, symptoms are you experiencing? What treatments are you trying?

Also, I just wanted to let you know i’m editing the title of the thread to make it more searchable and hopefully get more activity.

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Replies to "Hi @jan52241. Welcome to Connect! I'm sorry to hear you have felt alone in this diagnosis..."

Hi, Kelsey. Just a note to remind you that Martha Grogan, Angelica Dispenzieri and the Mayo crew put out a series of videos on things like this. They call them “Grand Rounds”. They are very well done and helpful. What Patients Need to Know is one of the videos.

In 2010 I became very sick and lethargic having to go on medical disability from my current job. I live in Prescott, AZ area and bounced around for months to different Doctor's for my many ailments. My wife, rest her soul, pushed until I was excepted by MAYO to be under their care. A local Dr. who works with MAYO finally drilled in to my hip bone and had the sample diagnosed as "Amyloidosis". My wife also forced thru the VA who finally determined all/most of my ailments due to "Agent Orange"(this took 6 months and having to send six duplicate copies. This was before they started getting their act together.). I was finally seen by two MAYO Dr's and received extensive chemo so it would be in remission. There is no cure, the damage is done and may increase in small increments. A few months after chemo I was told three alarming things about my treatments. 1) The life expectancy was normally 6 mo's, been 8 yr's ; 2) That I would get Neuropathy that would go away after 6 mo's, or not at all. Of course mine has been with me since chemo and increasing. 3) Sex drive wont be maybe for 6 mo's, or OK, then start to return or not. Of course since 2010 it hasn't revisited. BUT, MAYO has done right by me and I ain't look'in up at roots. They have been Angels in my pocket.

Hello @tlcox49. You are facing a lot of symptoms and diagnoses. I am inspired by your positive outlook despite those diagnoses and your exposure to Agent Orange. While we wait for some of the Amyloidosis members to offer their insights, you may find the following peripheral neuropathy discussion worth your time, https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/. It is a bit of a long discussion, however, if you choose to join it you will meet JohnJames who was also exposed to Agent Orange.

@tlcox49, despite the unpleasant side-effects of chemotherapy, how is your amyloidosis currently doing?

It is in remission. There is an ever so slight increase as time goes by, but nothing to be concerned over at this time of it returning. The main concern is the Kidneys. I am still followed by the wonderful team work of the MAYO Dr's for the Heart & Kidneys. There may be a chance of dialysis in the future, that is why my son and I are trying to get our traveling done before it must be curtailed. But keeping track of all the refills and restraints put on some refills our timing must be paid attention to. Again but, the damages done are irreversable is a problem. I love those who have assisted me in surviving past that 6 month time frame.