Hi, Jill and Board. Back again Not much has changed with me. Except that I have discovered a bunch of new stuff about Amy. The bunch of folks in my blood kindred who seem to have some form of Amy is now around 17. Thinking now it may be some form of Wild Type. Since several of us have cerebellar cortex deposits, it seems to be close to Finnish or Icelandic, Cystatin-C or Gelsolin. Since we know our DNA shows this area, it makes sense. My Kappa Light Chain value has dropped a little, but is still 50% over Ref value. Same with proteinuria. Anyway, every day I work on my record a little. https://bit.Ly/1w7j4j8 in Amyloidosis. I have 5 pros telling we what to take and to eat and to do for my diabetes. Each of them tells me something different to do about insulin and food. If I took the exact insulin which the want me to take, it would cost me about $10,000 per month since I am getting very close to the donut hole. So one by one, I am just dropping various kinds of medicines. It is all I can do.

@colleenyoung , This is for you, and for many others up the Mayo Ladder, right through Dr. Morey Gertz and higher. In most of the world there are places where the more technically specialized and advanced dX's and treatments are simply not available. Yet Mayo has advertised it will work with local medicos to make these available wherever possible. The problem I have is finding local docx and labs who WILL gladly work with Mayo. I spent four months at Mayo-AZ last year before I even had an appointment with a haematologist (Mayo's fault, frankly) and even then all the outcomes were extremely non-sensical. I should have gone to Rochester, and I know it. I am trying to put together the wherewithal to make that trip this year, but it looks like it will not happen, and I do not expect to live another year.What I need is some help finding a system in Western Oregon that WILL work with Mayo-MN. Even the labs will not work with Mayo-AZ. For instance, Mayo-MN said last year that they can not do more typing of my AL without further samples work. OK. But the local labs here can not do the typing because they do not have the "Atom Force Electronic Microscope" required, or even the equipment. So they are not willing to send samples to MN. That would take away their whips to force the legislature to give them more money for expenses, which they actually use only to pay their administrators more outrageous salaries. Anyway, put in some system where I can go to and find personnel and labs who can and will work with Mayo-MN, so I do not have to make another trip of 6,000 miles to say "hello". PLEASE

Hi @oldkarl,
What a frustrating conundrum. It is regrettable that there appears to be lack of willingness on the part of local care providers to coordinate your care with support from Mayo Clinic experts. We have several Connect members with a variety of conditions who have experienced good partnerships between their local provider and Mayo Clinic physicians.

I looked at the Mayo Clinic Care Network, which is the first place I recommend looking for local care providers who work with Mayo Clinic. See the list of members here http://www.mayoclinic.org/about-mayo-clinic/care-network/members Unfortunately, there is an absence of practitioners in western Oregon.

Our appointments office may be able to help you find local providers and diagnostic centers/labs. Please call Mayo Clinic in MN or AZ (your choice). The contact information can be found on this page http://mayocl.in/1mtmR63 If you have already tried this, perhaps you can ask to speak with the oncology or hematology department directly.

It's a bit disconcerting that these posts are almost a year old. What happened to these people?
Are there no current posts?

Hello @carolynaune, I can understand how looking at older post may be off-putting or concerning. Connect will be undergoing a bit of a makeover to help lay out discussions in a more relevant order. I'd like to tag @oldkarl and @1nan to rejoin the discussion as they have posted more recently than a year ago. @carolynaune, if you don't mind sharing, what questions do you have for the community?

If I can be of any help or support, willing to do so. June will be start of my third year of treatment for Multiple Myeloma. I was diagnosed in 2004. Currently I am hoping to connect with someone being treated with Darzalex. After eight weekly treatments, I just had the second of eight biweekly treatments.

Have not had a definitive answer to what type Amyloidosis I have . Had bone marrow biopsy and fat aspiration. Not good enough I'm told. Need a heart biopsy. Has any one else had this experience?