Hi this is all new to me any info that I can get will be a big help when I see the hemotoligist. I have been having problems with my heart extreme fatigue in my legs weak and tired all the time and my hands and feet go numb when I go to bed. I was diagnosed with HOCM in 2013 septal myectomy in 2014 some when the above problems set in I assume my heart was getting worse and it probally is . My Dr treating me for hcm decided to check me ttr amyloidisis which was ruled out. But my Kappa LT chain came back at 50.1 Kappa/Lambda 2.33 which are high I do not know how high above normal this is. Now he is checking for Al amyloidisis no clue what it is google is all over the place with different info on it and treatment. So any information will be great. What do I need to ask the Dr and are my number bad high. since all this has started about 6 months ago my kidney number are getting worse also
Hi this is all new to me any info that I can get will be a big help when I see the hemotoligist. I have been having problems with my heart extreme fatigue in my legs weak and tired all the time and my hands and feet go numb when I go to bed. I was diagnosed with HOCM in 2013 septal myectomy in 2014 some when the above problems set in I assume my heart was getting worse and it probally is . My Dr treating me for hcm decided to check me ttr amyloidisis which was ruled out. But my Kappa LT chain came back at 50.1 Kappa/Lambda 2.33 which are high I do not know how high above normal this is. Now he is checking for Al amyloidisis no clue what it is google is all over the place with different info on it and treatment. So any information will be great. What do I need to ask the Dr and are my number bad high. since all this has started about 6 months ago my kidney number are getting worse also
Welcome to Connect, @tollie It sure helps to feel that you’re not alone when you have a new diagnosis. There are a number of members in our forum with Al-Amyloidosis, so let’s get you Connected! Hopefully they can help give you the information you’re looking for regarding what questions to ask your doctor and how to navigate through this new diagnosis and potential treatments.
Welcome to Connect, @tollie It sure helps to feel that you’re not alone when you have a new diagnosis. There are a number of members in our forum with Al-Amyloidosis, so let’s get you Connected! Hopefully they can help give you the information you’re looking for regarding what questions to ask your doctor and how to navigate through this new diagnosis and potential treatments.
Welcome to Connect, @tollie It sure helps to feel that you’re not alone when you have a new diagnosis. There are a number of members in our forum with Al-Amyloidosis, so let’s get you Connected! Hopefully they can help give you the information you’re looking for regarding what questions to ask your doctor and how to navigate through this new diagnosis and potential treatments.
Hi this is all new to me any info that I can get will be a big help when I see the hemotoligist. I have been having problems with my heart extreme fatigue in my legs weak and tired all the time and my hands and feet go numb when I go to bed. I was diagnosed with HOCM in 2013 septal myectomy in 2014 some when the above problems set in I assume my heart was getting worse and it probally is . My Dr treating me for hcm decided to check me ttr amyloidisis which was ruled out. But my Kappa LT chain came back at 50.1 Kappa/Lambda 2.33 which are high I do not know how high above normal this is. Now he is checking for Al amyloidisis no clue what it is google is all over the place with different info on it and treatment. So any information will be great. What do I need to ask the Dr and are my number bad high. since all this has started about 6 months ago my kidney number are getting worse also
I'm not sure if this will help but it can't hurt. My Kappa Light Chains are at 45 and I was freaking out. I went to see my Dr and he was so pleased to see them "so low" I asked him what he was talking about and he said he has seen 300 and 400 and that I should enjoy my summer and see him in 6 months! Granted, I am otherwise very healthy but I do have MGUS. I just wanted you to know that one number in itself does not make a full picture.
Hi this is all new to me any info that I can get will be a big help when I see the hemotoligist. I have been having problems with my heart extreme fatigue in my legs weak and tired all the time and my hands and feet go numb when I go to bed. I was diagnosed with HOCM in 2013 septal myectomy in 2014 some when the above problems set in I assume my heart was getting worse and it probally is . My Dr treating me for hcm decided to check me ttr amyloidisis which was ruled out. But my Kappa LT chain came back at 50.1 Kappa/Lambda 2.33 which are high I do not know how high above normal this is. Now he is checking for Al amyloidisis no clue what it is google is all over the place with different info on it and treatment. So any information will be great. What do I need to ask the Dr and are my number bad high. since all this has started about 6 months ago my kidney number are getting worse also
Thank you I know nothing about this disease I have been battling HCM since 2013 since Jan 23 my symtoms have changed or different heart kidney and liver numbers have been all over the place. I was reffered to a heart transplant team but according to them my numbers was not there yet and have actually improved. But my episodes and symtoms have got a lot worse. I have been always active but my shortness of breath and extreme fatigue and weakness numbness in hands and feet have slowed my out door activities. So I went back to my hcm Dr he done bloodwork heart cath and other test he said fluid is building up and my kappa numbers where elavated he rulled out amyloidisis all except AL amyloidosis and is sending me to a hematoligist. Hopefully if this is my problem we caught it early. All I know is my symtoms are different now than before
Many on here are dealing with elevated levels of either Kappa or Lambda or both. Only an oncologist or hematologist can accurately diagnose your specific case. I would encourage you not to Google search to much as it doesn’t help and can only add to your anxiety.
I would say only more testing and reviewing of results are going to be able to give you clear understanding and direction for care.
There are some great people on here to help support your Journey.
Work with your primary care doctor to get a referral if need to an oncologist or hematologist to review current testing findings and set a path for needs to be done next. Labs can tell them many things. Some of these labs come back quick and others need more time.
Blood draws are the most common to get the information need for initial review. Also, a urinalysis with a 24 hour urine test will likely give some good insight.
After all of that, they may find a bone marrow biopsy is needed. It’s a pretty simple procedure although recovery is different for everyone. My hip was very soar several days later. But nothing I couldn’t manage.
We have all had our own path for determining where we are and where we might be headed. No two of us are the same but we do however have many of the same stories and experiences. Stay calm and find a good doctor that can support you through this. Talk to family and try not to self diagnose.
Work with your primary care doctor to get a referral if need to an oncologist or hematologist to review current testing findings and set a path for needs to be done next. Labs can tell them many things. Some of these labs come back quick and others need more time.
Blood draws are the most common to get the information need for initial review. Also, a urinalysis with a 24 hour urine test will likely give some good insight.
After all of that, they may find a bone marrow biopsy is needed. It’s a pretty simple procedure although recovery is different for everyone. My hip was very soar several days later. But nothing I couldn’t manage.
We have all had our own path for determining where we are and where we might be headed. No two of us are the same but we do however have many of the same stories and experiences. Stay calm and find a good doctor that can support you through this. Talk to family and try not to self diagnose.
I get it. I know (or think I know) what’s going on with me and my diagnosis and I still get caught up worrying and overthinking things.
I have MGUS, the first stages of what may turn into Multiple Myeloma. I’ve had labs and will continue to have labs every 4 to 6 months till I’m gone. I’ve had two bone marrow biopsies and a second opinion from the Mayo in Rochester MN.
I’ve been told with my situation and what the labs and biopsies told them, I will likely have 1% progression every year and die of something completely unrelated.
That however doesn’t stop my mind wondering when my legs hurt or I read someone else’s story. I just have to have faith that we monitor it like we’re supposed to and if it does progress to needing treatment, I know there are a lot of options with very positive outcomes.
I’m glad we caught it early because many times these things are caught when the big damage is already done.
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Hi this is all new to me any info that I can get will be a big help when I see the hemotoligist. I have been having problems with my heart extreme fatigue in my legs weak and tired all the time and my hands and feet go numb when I go to bed. I was diagnosed with HOCM in 2013 septal myectomy in 2014 some when the above problems set in I assume my heart was getting worse and it probally is . My Dr treating me for hcm decided to check me ttr amyloidisis which was ruled out. But my Kappa LT chain came back at 50.1 Kappa/Lambda 2.33 which are high I do not know how high above normal this is. Now he is checking for Al amyloidisis no clue what it is google is all over the place with different info on it and treatment. So any information will be great. What do I need to ask the Dr and are my number bad high. since all this has started about 6 months ago my kidney number are getting worse also
Welcome to Connect, @tollie It sure helps to feel that you’re not alone when you have a new diagnosis. There are a number of members in our forum with Al-Amyloidosis, so let’s get you Connected! Hopefully they can help give you the information you’re looking for regarding what questions to ask your doctor and how to navigate through this new diagnosis and potential treatments.
First, here are a few links to informational articles on Amyloidosis:
http://www.mayoclinic.org/diseases-conditions/amyloidosis/symptoms-causes/syc-20353178
Also from Mayo News Network: https://newsnetwork.mayoclinic.org/discussion/what-is-amyloidosis-and-10-signs-you-might-have-it/
From the Cleveland Clinic: https://my.clevelandclinic.org/health/diseases/22598-cardiac-amyloidosis
~~
Below are just a few of the many conversations where you can meet other members who have Al-Amyloidosis such as @countrygirlusa @blackscarecrow @jenrico @azlatina @0820 and others in multiple posts.
You can find more by typing in Al-Amyloidosis in the search bar at the top. But these will get you started. ☺️
Links to discussion about Al-Amyloidosis
https://connect.mayoclinic.org/discussion/al-amyloidosis-maybe/
~~
Recently diagnosed with AL Amyloidosis: Any advice?
https://connect.mayoclinic.org/discussion/al-amyloidosis-2/
~
https://connect.mayoclinic.org/discussion/diagnosed-with-al-amyloidosis-would-like-to-hear-from-someone-about-what/
~
Diagnosed with AL Amyloidosis. What can I expect? (This is an older posting but worth perusing through all of the replies)
This reply contains videos with information about AL Amyloidosis. https://connect.mayoclinic.org/comment/732756/
Will this be your first visit with the hematologist?
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2 ReactionsThank you
Yes this will be my first visit with the hematolgist I am lost right now fighting hcm now this
I'm not sure if this will help but it can't hurt. My Kappa Light Chains are at 45 and I was freaking out. I went to see my Dr and he was so pleased to see them "so low" I asked him what he was talking about and he said he has seen 300 and 400 and that I should enjoy my summer and see him in 6 months! Granted, I am otherwise very healthy but I do have MGUS. I just wanted you to know that one number in itself does not make a full picture.
-
Like -
Helpful -
Hug
8 ReactionsThank you I know nothing about this disease I have been battling HCM since 2013 since Jan 23 my symtoms have changed or different heart kidney and liver numbers have been all over the place. I was reffered to a heart transplant team but according to them my numbers was not there yet and have actually improved. But my episodes and symtoms have got a lot worse. I have been always active but my shortness of breath and extreme fatigue and weakness numbness in hands and feet have slowed my out door activities. So I went back to my hcm Dr he done bloodwork heart cath and other test he said fluid is building up and my kappa numbers where elavated he rulled out amyloidisis all except AL amyloidosis and is sending me to a hematoligist. Hopefully if this is my problem we caught it early. All I know is my symtoms are different now than before
Many on here are dealing with elevated levels of either Kappa or Lambda or both. Only an oncologist or hematologist can accurately diagnose your specific case. I would encourage you not to Google search to much as it doesn’t help and can only add to your anxiety.
I would say only more testing and reviewing of results are going to be able to give you clear understanding and direction for care.
There are some great people on here to help support your Journey.
-
Like -
Helpful -
Hug
11 ReactionsWork with your primary care doctor to get a referral if need to an oncologist or hematologist to review current testing findings and set a path for needs to be done next. Labs can tell them many things. Some of these labs come back quick and others need more time.
Blood draws are the most common to get the information need for initial review. Also, a urinalysis with a 24 hour urine test will likely give some good insight.
After all of that, they may find a bone marrow biopsy is needed. It’s a pretty simple procedure although recovery is different for everyone. My hip was very soar several days later. But nothing I couldn’t manage.
We have all had our own path for determining where we are and where we might be headed. No two of us are the same but we do however have many of the same stories and experiences. Stay calm and find a good doctor that can support you through this. Talk to family and try not to self diagnose.
-
Like -
Helpful -
Hug
6 ReactionsThank you for taking time and all the information. Just not knowing is the hardest part.
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Helpful -
Hug
6 ReactionsI get it. I know (or think I know) what’s going on with me and my diagnosis and I still get caught up worrying and overthinking things.
I have MGUS, the first stages of what may turn into Multiple Myeloma. I’ve had labs and will continue to have labs every 4 to 6 months till I’m gone. I’ve had two bone marrow biopsies and a second opinion from the Mayo in Rochester MN.
I’ve been told with my situation and what the labs and biopsies told them, I will likely have 1% progression every year and die of something completely unrelated.
That however doesn’t stop my mind wondering when my legs hurt or I read someone else’s story. I just have to have faith that we monitor it like we’re supposed to and if it does progress to needing treatment, I know there are a lot of options with very positive outcomes.
I’m glad we caught it early because many times these things are caught when the big damage is already done.
-
Like -
Helpful -
Hug
9 Reactions