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Amyloid Question regarding symptoms

sg725
0 Recommendations

I am a military service member who in the past have had a byopsy finding amyloids in my kidney. Aside from that and suffering from severe bleeding in my kidneys when they act up, is this a good indicator I have amyloidosis? I am scheduled to see a specialist soon to get further testing to confirm. At times my joints act up, feel weak when bleeding starts and bleeding will not stop until I get failure of the kidney or I get a stent placed to relieve the buildup.

Explore topics in this discussion:

Dialysis Leukemia Stent Amyloidosis

5 replies

Muriel

The kidney can be involved in many types of amyloidosis. Unless you go to a center of experience or excellence such as Mayo or Boston Univ. Med. Center (both on our website www.amyloidosissupport.com under medical links) you will likely not get proper diagnosis or treatment.
Also you might want to join www.amyloidosisonline.com and talk to 600 others walking your walk. Good Luck and God Bless and e-mail me muriel@finkelsupply.com with where you live and where you are stationed.
Muriel

Muriel Finkel
President
AMYLOIDOSIS SUPPORT GROUPS
ASG www.amyloidosissupport.com
Toll Free 866-404-7539
National Organization Member of NORD
www.rarediseases.org
www.popsrun.org
www.bobkingmemorial.com
www.amyloidosisonline.com - Over 590 have joined

"Don't Take Your Organs, To Heaven, Heaven Knows We Need Them Here"

GaPeach

Hello,
The military has covered trips to Mayo Clinic in Arizona for a military wife at Camp Pendelton. Please, Please ask for a referral to them. It is imperative that you see a doctor that knows how to correctly treat this disease. You will need a team of specialists to treat you. That team may include an oncologist, nephrologist, cardiologist, neurologist or gastroenterologist. Dr. Reeder at Mayo has treated many of our patients and he is well versed in the aspects of this disease. Or you can try Dr. Vescio at Cedars Siani Hospital as he also has some experience with the various treatments. Have you begun dialysis as of yet? Do you have problems with swelling in your feet and legs, low blood pressure, or tingling in your extremities? Please do as Muriel suggested and join our main email support group. You will find many folks there that will offer you support and guidance as you begin this journey. Please do not waste time, you need to receive a complete evaluation in order to find out which type of amyloidosis you have. The course of treatment you receive is dependent on the type of amyloid. If the doctors can't tell you what type you have, they don't know what they are doing! I don't mean to scare you, I just want you to receive the treatment you so desperately need.

Paula Schmitt
Atlanta Co- Facilitator
Amyloidosis Support Groups

sg725

Thanks Paula,
As a matter of fact I have been able to schedule with Vescio on April 17th. I am bringing all my previous civilian and military med files with me.

The sooner I can get this thing found out the faster I can get discharged. Thank you again

GaPeach

Oh that is wonderful news! Please keep me posted on your case. You also need to contact teh Leukemia and Lymphoma society at www.lls.org. They have a financial assistance program that will give you up to $500.00 each fiscal year (July-June). These funds can be used to reimburse you for travel costs, some medicines and medical procedures. If you enter your zip code at the top of their home page it will give you the contact info for the chapter office in your area. Contact them asap so you can get the necessary forms you will need to have signed by the doctor. They also have a co-pay assistance program that pays up to $5,000.00 each year. However, I do believe that these funds are depleted for the remainder of this fiscal year but please ask the LLS about it. They may have you go ahead and process the paperwork now so you will have everything done when their new funds become available. You must also meet certain financial qualifications to participate in this program. Please check our website at www.amyloidosissupport.com and click on the patient/caregiver resources tab for additional helpful links.

Paula

sg725

Thank you again. Oh Have a wonderful Easter you and everyone here!

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