AL Amyloidosis: Where were you treated?

Posted by tayleebuzz @tayleebuzz, Apr 12 9:23pm

Hello. My dad was recently diagnosed with AL Amyloidosis. We live in northcentral WI and he is ready to take a step up in the level of specialty care. We are considering Mayo-Rochester and Barnes Jewish in St. Louis. Is there anyone out there who is currently, or has been treated by Mayo-Rochester for AL Amyloidosis and can tell me how they feel about the treatment? Also, a question my dad (and we) have is, he doesn't know where he will stay if he's doing outpatient treatment. What do people do? Staying at a hotel I'm sure gets expensive. Any advice would be much appreciated. Thank you. 💜

@tayleebuzz Hello and welcome to Mayo Clinic Connect. This is a caring community where members share their experiences to help others with similar issues, answer questions and offer hope.

It can be confusing and intimidating searching for the best care. As a patient of Mayo-Rochester, I’m a bit biased but your dad would be in excellent hands at the Mayo Clinic.
I also have a home in North Central Wisconsin. Location-wise, Rochester would be much easier and closer for your dad. Rochester itself is a smaller community, easy to navigate and no ‘white-knuckle’ driving.

I’m so sorry your dad is dealing with AL Amyloidosis. It’s not a disease I’m familiar with so I did a little research on the Mayo website. It sounds like a complicated condition with many different types of the disease.
Has your dad’s specific type of Amyloidosis been diagnosed? Is he currently receiving treatment?
There are a few discussions in the Connect community regarding AL Amyloidosis. They are older but still filled with information and experiences of members.

I’ve posted links below which will take you to some of the conversations in Connect.

> Diagnosed with AL Amyloidosis. What can I expect? https://connect.mayoclinic.org/discussion/diagnosed-with-al-amyloidosis-would-like-to-hear-from-someone-about-what/

> Mayo Clinic website regarding AL Amyloidosis, diagnosis and treatment. https://www.mayoclinic.org/diseases-conditions/amyloidosis/care-at-mayo-clinic/mac-20353187
> Video on What patients with amyloidosis need to know https://connect.mayoclinic.org/event/amyloidosis-what-patients-need-to-know/ (A video)
> Link to the concierge services of Mayo Clinic Rochester. The services are free and a great resource to hotel options based on your dad’s budget and individual needs. https://www.mayoclinic.org/patient-visitor-guide/minnesota/concierge-services
> Information regarding scheduling an appointment at Mayo. http://mayocl.in/1mtmR63

Wishing your dad all the best. If you have any other questions please don’t hesitate to ask.

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@tayleebuzz As Lori said, this can be very confusing. I live in rural Oregon, and the closest clinic with any experienced docs to see are a thousand miles away in Salt Lake City. There are people who claim to know about it, but they mostly can not even spell the words. And if a clinic is not equipped to do the sFLC kappa-lambda lab test, I see no sense of trying to see a doc there. The most important thing to do is to get a whole genome analysis done. Then you can do your own best work initially. With new meds and procedures coming on line frequently, you should be able to get some help at Mayo-Rochester. I tried at Phoenix, but it was a $10,000 trip and contact for absolutely nothing. But that was before I could understand that I needed to get the DNA work done. Now I know that I have a large package of Amyloidosis genes, including my Gelsolin, and my family Apolipoprotein, Multiple Myeloma, my Fukatin Limb Girdle Muscular Dystrophy, and about 55 markers for cardiomyopathy. So do your homework, and take it seriously. If you do not, no one else will either. oldkarl

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How about Amyloidosis?

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@flcrakr1

How about Amyloidosis?

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Hi @flcrakr1, welcome. You'll notice that I moved your message to this existing discussion about amyloidosis. I did this so you can connect with other members with the same diagnosis like @oldkarl @seanw @nick0820 @packgb19 and others.

@flcrakr1, were you recently diagnoses with amyloidosis?

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