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Amyloidosis Support Network

I’m new. Need help in Kentucky


#1

My husband was just diagnosed with amyloidosis. He is 55. Always been very healthy until the last two years. Started with burning mouth. Then chronic diarrhea. Both symptoms continued to worsen while he was going to all kinds of dr appts trying to figure it out. He had every gastro test possible. Dr. Said it was IBS. We didn’t agree so kept trying more drs. Finally… after two years of drs and tests… we finally got the diagnosis last Friday. Been researching where to get help. The National Amyloidosis Center in London is the best place, but as an American, I can’t imagine the cost. Don’t think Insurance would pay. So I don’t know where to go for his treatment. We are from Ky. Would appreciate any help. Don’t know what first step to take.


#2

Hello ma’am. My dad is also diagnosed with amloidysis. Am from India where medical expenses are also quite hight. According to doctors my dad has Al amloidysis . His symptoms was swelling of legs and abdomen . To control his amloidysis he was given veltip injection whose cost are quite high I’m India . Now his swelling has gone but has ascites or fluid in his stomach which has to taken out every month . According to doctor this is due to lever problem caused by amloidysis. Amloidysis usually targets various organs . So it’s important to know what organs are effected and their treat ment with concorrent Amyloidosis treatment is necessary …hope this info would share some light on amloidysis. More over they are various type so do read about it on internet as I did …consult doctor who specialises in blood (hemotologist)


#3

Hi. My wife was diagnosed about a year ago. We live in Buffalo but we went to Boston University Medical Center for tests and treatment recommendations. They are one of the few centers in the USA that specializes in amyloidosis. They do a 3 day evaluation and then provide a treatment recommendation. They know many specialists around the country and may be able to link you to treatment near where you live. They often grant money for travel and lodging expenses. They have a website online. They will send all their records and recommendations to the drs providing treatment. Amyloidosis is often treated with chemotherapy so the cancer center closest to where you live can probably provide treatment. Depending on which organs are affected other specialists may also provide treatment. My wife’s amyloidosis affected her kidneys and heart so she also sees a cardiologist and a nephrologist. Be optimistic. Treatment for the condition is much better today than in the past. My wife is doing well. One piece of advice - try to get all your drs and specialists to agree before proceeding with treatment or a change in treatment or medication. We found that treatment that improves amyloidosis might damage other organs. I wish the best for you and your husband


#4

Here’s another lead, which I found by using the search feature (magnifying glass, to left of your avatar).

Here is another resource that looks useful:
http://ttrstudy.com/attr-amyloidosis/resources/

I also modified your subject line a bit. Hope you don’t mind.

All the best to you

Seenie from Moderator Support


#5

I want to thank you all so much for your help! We are going to call both Boston University and Mayo Clinic tomorrow to get information from them. I truly appreciate your help. I’m sure I will be on here a lot in the near future. Very thankful for this support group. :heartpulse:


#6

Pinkie, we’re glad that you found us and happy that you are as well.

This is a peer-to-peer community, where we get support by giving support. Stay with us, get to know some of your fellow members and be part of the strength in numbers!

Seenie


#7

Pinkie, a few months have passed now and I’m just wondering whether you’ve been able to connect with a service that’s going to give your husband the specialized care that he needs.

I missed the mark with my previous suggestions, I’m afraid. I should have referred you to this resource:
http://www.amyloidosissupport.org/

Hope this helps!

Seenie


#8

There are not many treatments so no matter where you end up they will give your husband the best treatment. My dad was followed by an oncologist with absolutely no patients with this illness and he has been in remission and doing well for 2 years. I heard rhe best is the Mayo Clinic. Sending you and your husband well wishes.


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