You are so right. Anxiety is awful to sit with. And it seems to take forever to get in to see a specialist. Take some deep breaths, and be comforted by the good news that the statistics are on your side.
Here’s hoping that waiting time for information is short for you and the results are encouraging.
Patty
I Wonder if anyone is experiencing trouble interrupting PET scans, etc. The words are big and none that I have been exposed to in the past. While I am an educated person, it is hard to put 2 and 2 together. I hope to find a Dr or liaison who can translate this stuff into something I can understand. It’s been 50 years since I had 10th grade biology.
I Wonder if anyone is experiencing trouble interrupting PET scans, etc. The words are big and none that I have been exposed to in the past. While I am an educated person, it is hard to put 2 and 2 together. I hope to find a Dr or liaison who can translate this stuff into something I can understand. It’s been 50 years since I had 10th grade biology.
Welcome to Connect @susanjane1. It sounds like you’ve recently had some tests and scans…results are back on the portal but you haven’t had a follow up appointment yet?
Fellow members on the forum aren’t able to interpret or diagnosis. But often there are some of us with similar medical stories who can at least use our experiences to let you know what some of the terminology means. Of course each case is personal and only your doctor can give you the details as it applies to you.
Were you having symptoms that led to all the testing? Did you receive a diagnosis?
I’m sure you’re very nervous about what your doctor will have to say. We have a number of other members in the forum who have various types of lymphoma, including Diffuse Large B-cell Lymphoma. Here are a couple of links to the most recent discussions.
~Putting the precision in precision medicine care for non-Hodgkin’s lymphoma
You’ll learn more about your diagnosis and treatment options today. Most of us in the forum have been where you are, new to a diagnosis and don’t know where to turn. We’re all here to help you over the hurdles because we’ve been on the same path. Sending a hug.
Will you let me know what you find out today?
Hello friends,
First I’ll connect to your discussion then ask a very different question. I have IgM kappa MGUS. My hematologist always likes to see how the kappa is doing and it’s been elevated but fairly stable so far, with normal kappa lambda ratio.
Now for a completely different subject. MGUS was diagnosed in 2015. The following year I had the first experience with a
Migraine Aura without headache. I’ve never had any headache. My question to other MGUS, or related Dx, folks is whether you may have experienced the optical effects of these so-called silent auras. Keeping track, I’ve had about 20 of them since 2016.
I’m posing this question because I’m wondering whether there may be any connection between MGUS and Migraine Aura. Who better to ask than our kind group? Looking forward to hearing from you, as well as any suggestions which may come to mind! Thank you! ~~~Raye
I was diagnosed with MGAS a few months after the covid vaccine.
I had inflammation of heart and lungs, skin, and leg weakness and foot swelling. They checked the #s every 4 to 6 months. It got better, but now my latest kappa/lambda chains free with ratio, serum is 2.48, the normal range is .26 -1.65.. my family doctor doesn't understand what this is..
I'm trying to get a professional explanation of what is going on. What is your range?
I was diagnosed with MGAS a few months after the covid vaccine.
I had inflammation of heart and lungs, skin, and leg weakness and foot swelling. They checked the #s every 4 to 6 months. It got better, but now my latest kappa/lambda chains free with ratio, serum is 2.48, the normal range is .26 -1.65.. my family doctor doesn't understand what this is..
I'm trying to get a professional explanation of what is going on. What is your range?
My kappa free light chain was 2.54...the normal. .33-1.94...I also have fatty liver which they do not know if that is the reason for the elevation...I also have an auto immune disease when also might be the reason...sometimes doctors just cant find the reason....
See your hematologist Oncologist and ask if time for bone marrow biopsy. They look at multiple other factors as well to determine if time. The bone marrow is where cancerous plasma cells are. If you haven't had one ask why.
You may be pre everything and nothing to worry about. How I started.
Connect
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You are so right. Anxiety is awful to sit with. And it seems to take forever to get in to see a specialist. Take some deep breaths, and be comforted by the good news that the statistics are on your side.
Here’s hoping that waiting time for information is short for you and the results are encouraging.
Patty
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Like -
Helpful -
Hug
6 ReactionsI Wonder if anyone is experiencing trouble interrupting PET scans, etc. The words are big and none that I have been exposed to in the past. While I am an educated person, it is hard to put 2 and 2 together. I hope to find a Dr or liaison who can translate this stuff into something I can understand. It’s been 50 years since I had 10th grade biology.
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Like -
Helpful -
Hug
2 ReactionsWelcome to Connect @susanjane1. It sounds like you’ve recently had some tests and scans…results are back on the portal but you haven’t had a follow up appointment yet?
Fellow members on the forum aren’t able to interpret or diagnosis. But often there are some of us with similar medical stories who can at least use our experiences to let you know what some of the terminology means. Of course each case is personal and only your doctor can give you the details as it applies to you.
Were you having symptoms that led to all the testing? Did you receive a diagnosis?
-
Like -
Helpful -
Hug
3 ReactionsYes I have a diagnosis, large B cell lymphoma. I meet with a Dr today to get results.
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Like -
Helpful -
Hug
3 ReactionsI’m sure you’re very nervous about what your doctor will have to say. We have a number of other members in the forum who have various types of lymphoma, including Diffuse Large B-cell Lymphoma. Here are a couple of links to the most recent discussions.
~Putting the precision in precision medicine care for non-Hodgkin’s lymphoma
https://connect.mayoclinic.org/blog/hematology/newsfeed-post/putting-the-precision-in-precision-medicine-care-for-non-hodgkins-lymphoma-1/~~~
https://connect.mayoclinic.org/discussion/r-chop-14-or-21/Diffuse large B-cell lymphoma (DLBCL): R-CHOP-14 or 21
Posted by @fwpoole and includes comments from @msdoss @ckeys @sbergerkinkade @grandpabob @jals and others who have Large B-cell lymphoma
You’ll learn more about your diagnosis and treatment options today. Most of us in the forum have been where you are, new to a diagnosis and don’t know where to turn. We’re all here to help you over the hurdles because we’ve been on the same path. Sending a hug.
Will you let me know what you find out today?
-
Like -
Helpful -
Hug
5 ReactionsHello friends,
First I’ll connect to your discussion then ask a very different question. I have IgM kappa MGUS. My hematologist always likes to see how the kappa is doing and it’s been elevated but fairly stable so far, with normal kappa lambda ratio.
Now for a completely different subject. MGUS was diagnosed in 2015. The following year I had the first experience with a
Migraine Aura without headache. I’ve never had any headache. My question to other MGUS, or related Dx, folks is whether you may have experienced the optical effects of these so-called silent auras. Keeping track, I’ve had about 20 of them since 2016.
I’m posing this question because I’m wondering whether there may be any connection between MGUS and Migraine Aura. Who better to ask than our kind group? Looking forward to hearing from you, as well as any suggestions which may come to mind! Thank you! ~~~Raye
-
Like -
Helpful -
Hug
1 ReactionI was diagnosed with MGAS a few months after the covid vaccine.
I had inflammation of heart and lungs, skin, and leg weakness and foot swelling. They checked the #s every 4 to 6 months. It got better, but now my latest kappa/lambda chains free with ratio, serum is 2.48, the normal range is .26 -1.65.. my family doctor doesn't understand what this is..
I'm trying to get a professional explanation of what is going on. What is your range?
-
Like -
Helpful -
Hug
3 ReactionsI've had migraines with aura my whole life, no headache, thankfully. Diagnosed with MGUS September 2022. So, not related for me. Hope this helps!
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Helpful -
Hug
1 ReactionMy kappa free light chain was 2.54...the normal. .33-1.94...I also have fatty liver which they do not know if that is the reason for the elevation...I also have an auto immune disease when also might be the reason...sometimes doctors just cant find the reason....
See your hematologist Oncologist and ask if time for bone marrow biopsy. They look at multiple other factors as well to determine if time. The bone marrow is where cancerous plasma cells are. If you haven't had one ask why.
You may be pre everything and nothing to worry about. How I started.
-
Like -
Helpful -
Hug
2 Reactions