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Well, it is difficult to find others with the bleeds and deposits, stemming from Cystatin C or Gelsolin. As for the rest, two years ago it was probably true that nothing could be done. At this moment, however, I think I would start with Morey Gertz MD, and Angela Dispenzieri, MD, and Martha Grogan, MD at Mayo-Minnesota, Dr Landau, or Ralph(?) Commenzo at Memorial Sloan Kettering, or the most experienced at Fred Hutchinson. Just call them. There are at least a dozen or so MDs there that can tell you a lot more than I can. Let me say it another way. If it did not come from Mayo Minnesota, or Boston Brigham & Women's, or City of Hope or Stanford, or Hutchinson, I would keep looking. When I was young I milked cows by hand. We had one cow who gave milk out of only three spigots. But so help me, I could never remember which one did not provide. I only remembered when she kicked because I grabbed the wrong one. But I did learn I had to keep trying.
Replies to "Well, it is difficult to find others with the bleeds and deposits, stemming from Cystatin C..."
@soloact Hi, Solo! No, I have no one in mind at Hitchinson. There is one possibility, though. I may do it myself, although it would be a good thing for you to become familiar with the process. Go to AmyloidosisFoundation.org, or just Amyloidosis.org. They have a column for the support groups around the country. One of these groups meets twice each year in Seattle at Hutchinson, and meets twice each year at OHSU in Portland. They just met, about a month ago, in Seattle. I believe Morey Gertz from Mayo-MN. They should mention the organizing people. I hope to make the next meeting, which should be in Portland in January or February. My doctor, Farnoush Abar of Corvallis, will probably be one of the speakers. I wish I had known about Amy sooner. One of my good friends died of it a few months ago and was never diagnosed because her doctor had no idea. I just talked with her husband yesterday, and learned the truth.
Why is knowing about it sooner an advantage if there's no treatment, no cure? I would think the dread would offset any benefits from support groups?
You know that Fred Hutchinson is a cancer center, right? This isn't a form of cancer, from what I've read so far? But I understand what you're saying: Even if they merely hosted the event, who was involved and speaking would be great leads. I don't know that I have it, but I'm in an area where medical care isn't so great, our only neurologist is fresh out of med school and seems like she's 15 in mannerisms, and some of my recent test results make me concerned.
@soloact I surely know what you are speaking of. I am 100 miles from a hematologist and neurologist (Yachats). My Renal guru says that since my GFR is normal, everything else is fine. Mayo says a high GFR after a low GFR is a sign of progressing disorder. Not good. My local is a PA, but very caring, if uneducated. And knowing about this sooner is an advantage now because there is treatment, and it gets better all the time. I expect to see some much more efficient meds go to the FDA for approval before the end of the year, and available for you and me within 4-6 months.We need to be ready.
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Is there someone in particular whom you recommend at Fred Hutchinson, in Seattle, @oldkarl?
You have been kind, generous, and courageous with your information and your coping with this disease and prognosis. Thank you.