I am nervous. I gave 6 vials of blood and 24 hours of urine to screen for Amyloid. It should be a statistical long shot but some things look funky in my history. I remember this all too well with dad. Who knows, maybe my body will help find a cure. I am trying to hide this from my family and most friends until I know it is truly a concern. I am usually very honest so this is just tough. The bright side: It is almost time to celebrate my kids birthday and I have a great vacation planned.
I'm sure you must have butterflies in your stomach, Tracy. We are all hoping for the best for you! I am glad you posted here and shared your worries with us. I hope you have a wonderful vacation and birthday celebration with your family. Keep us posted. :)
I totally understand. I wish I could find someone to do screening in our area. My brothers and We have each tried so many Dr’s and clinic. And I too, would take the steps you have because my husband and kids worry so much. I have lost 17 lbs and my family get together to find a way to ask me if I am okay. I would love to have this peace for my family. Hoping for the best for you.
Tracy..You will be in my thoughts and prayers! Please keep us informed!
we're here for you Tracy. Please keep us update on what the tests return. thx
Okay!!! I think I found good news. I still have to send reports to Dr. Dingli at Mayo. I still have random protein in my pee and low C3. However, No light Chain per nurse report locally at my primary care physician's office. I have to pick up the results still. I am looking forward to a carefree vacation ;))))) I will share what Dr. Dingli has to say in the end. I will ask him more about when screening is warranted. I have to say this has given me peace to look into it. Thanks for your prayers and support.
Terrific, Tracy!!
If you are like me, you have noticed that no two amyloidosis patients have exactly the same story. The symptoms all vary. I can fully understand why you are nervous. When I hear friends and family talk about some of the medical issues they are facing, I always wonder to myself if they have this awful disease.
My husband was diagnosed in May and had his first of 2 cardiac arrests within 3 weeks of diagnosis. I was able to revive him so the disease did not win!
The light chain news is very good! I look forward to hearing the rest of your good news in future posts.
Prayers from Iowa,
Teresa
Thanks Teresa,
So I have light chain but it appears within the normal range. My question of the day: Does the general population have light chains? I think only Dr. Dingli is gonna set my mind at ease. Teresa, hang in there and thanks for prayers.
Hello Tracy,
My name is Paula and I am a Facilitator with the Amyloidosis Support Groups www.amyloidsissupport.com and run the Atlanta GA, Jacksonville, FL and Silver Spring MD meetings. From reading your history of posts I see that your father had Cardiac Amyloidosis and since he had chemo, I know it had to be AL Amyloidosis. I have been involved extensively with patients from around the country since 2006 and I only know of 2 sets of child/parent cases of primary amyloidosis. I'm happy to say that they are all doing well! I am a bit confused by something you said in one of your emails today. "I still have random protein in my pee and low C3. However, No light Chain per nurse report locally at my primary care physician's office. " Are you saying that no light chains showed up in your urine? The light chain measurement that is taken when trying to diagnose amyloidosis is taken from the blood, NOT the urine. The test you need is the Serum Free Light Chain test. You should also have a fat pad biopsy done and sent to Mayo. I am very glad to see that your are in contact with Dr. Dingli. He should be able to alleviate your fears. The Mayo hema/oncs are some of the best in the world when it comes to treating amyloidosis. I was just in Chicago with Dr. Gertz, Dr. Dispenzeri, Dr. Zeldenrust and Dr. Martha Grogan, cardiologist. In order for you to better understand the disease and the necessary testing to make a diagnosis please go to www.amyloidaware.com and read our new informational booklet. The above doctors had a hand in writing and editing this book, which just made its debut a week ago in Chicago. Please feel free to share this link with anyone. The more the merrier!!! There are NO copyrights on the book so anyone can feel free to print it as well. We WANT the information out there for the general public and hometown physicians and don't forget your dentist either!
May I ask what symptoms you are having that lead you to believe that you might have amyloidosis?
To answer your question about light chains the answer is YES. We also all have heavy chains but in amyloidosis those little buggers just refuse to act correctly. Think of them as rebellious teenagers never doing what they are supposed to do!
The paragraph below is an excerpt from the booklet and I hope it helps you to understand light chains a bit better.
AL (or primary) amyloidosis is the most commonly diagnosed form of the disease, accounting for 85% of all cases in developed countries. The disorder begins in the bone marrow, the soft tissue that fills the cavities of our bones, where red and white blood cells are formed. One kind of white blood cell, called plasma cells, produces antibodies that protect us from infections. These antibody proteins (immunoglobulins) are made up of light and heavy chain molecules. Normally, our plasma cells produce whole antibodies, and our body breaks down these proteins and recycles them after a short time. In AL, though, too many unassembled, misfolded light chains are being made. These “free light chains” (and, in rare cases, free heavy chains) cannot be broken down efficiently. They bind together to form amyloid fibrils that build up in the extracellular space of organs and tissues. In this way, the body’s normal functioning is impaired. Problems typically arise in the kidney, heart, liver, spleen, nerves, intestines, skin, tongue, and blood vessels.
Paula Schmitt
Localized Amyloidosis
GA/FL/DC Support Group Facilitator
Amyloidosis Support Group
Forgot to tell you that the Dallas Support Group meeting will be held THIS SATURDAY, November 9th. For more information on the meeting go to http://www.amyloidosissupport.com/support_groups/texas.html
Thank you so much. I ran the blood test and have light chains; they just are still within the top of the reference range. The nurse who gave me results over the phone might not have understood the results. Bottom line: I am really healthy at the moment but concerned for the future. I am emailing my results to dad's hematologist at Mayo. It always bothered me through the years that results of abnormal blood and urine protein have showed up over and over since 2000. I cannot have babies because I am missing the Beta 3 protein necessary for a baby to attach. I put it all together and sent it to Dr. Dingli and he recommended performing blood and urine testing. He stated that Primary Amyloidosis is generally not hereditary but requested testing be performed. I thank him for his caution. Currently the only possible symptoms: episodes of low blood pressure, episodes of Orthostatic hypotension (dizzy spells) while gardening, doing yoga, and yesterday in a weight lifting class. My reason for looking into this is that my granny died of Congestive Heart Failure and had renal failure as well. I won't be able to make the Dallas meeting but hope to attend the next one. Thanks for your support and input! I will share what happens next.
Thank you GA peach, Paula for the link to http://www.amyloidosissupport.com/AmyloidAware_Booklet.pdf. I found it to be a great resource for understanding the testing process. I am happy to say that "It was just a false alarm" and I am not at significant risk for Amyloidosis based on the test results. Dr. Dingli recommended that I visit an immunologist and I will visit my awesome friend and ENT to see about a tilt table test (sounds sick and wrong seeing how reaching on a low shelf shopping is frustrating enough). I am now trying to decide how to thank Dr. Dingli and his secretary, Dee. I would bake them an apple pie if I lived closer. Maybe a Victoria's gift certificate...it was my dad's favorite Rochester restaurant. Hope all is well with everyone. Thanks for the outpouring of support.
Great resource Paula. We are finishing up the Ben's Friends Patient Stories Book. We're so excited about it!