Young Woman with MGUS (MONOCLONAL GAMMOPATHY)
Hi! My name is Britney and I am 28 years old. This last October, October 2016, I found out my body was making a monoclonal clone or a monoclonal protein. I didn't know what any of that meant. I didn't understand anything about monoclonal proteins or what it could mean for me I didn't even know what Multiple Myeloma was, or Myeloma at all. I didn't know it was one of the larger, more frequent, cancers that happen more frequently - especially in the older population. Or that it was one of the more prevalent blood cancers. I didn't know anything about any of it.
When I found out my body was making this protein I was kind of scared, I didn't know what to think, I didn't know how to feel. I took to the internet and tried to learn as much as I could. I read studies.
I understood the different kinds of plasma cell dyscrasias that come from a m-protein. I knew it wasn't necessarily Multiple Myeloma I still didn't know what it meant for me. I also knew not to, kind of, jump to any conclusions Because I really didn't know what all it could be or what it meant. However, I did understand it wasn't something good It wasn't just something to brush off.
The person who found my monoclonal gammopathy was a rheumotologist who contacted me about my lab results he told me it wasn't a big deal. And he brushed it off. However, the referring physician, that referred to me to the rheumotogist in the first place used to be a Hematologist and he knew better. And he ran more tests, as well. And he determined that this was something to see an oncologist/hematologist for.
So he sent me off, to see an oncologist, but from the time it was found until I was sent to an oncologist it was six months. And I had so many different test done. I think the biggest obstacle I've found in being only 28 with a monoclonal gammopathy, was how rare it was, and most doctors didn't want to think it was what it was. And they didn't want to think that that it was correct, I think. I think that is why there was such a delayed Amount of time from when it was found and when I was sent to an oncologist. However, I could be wrong... Another problem I have found since finding this protein is findng other people who have it as well. No one I know in my world that I know personally knew anything about this, as well.
And have not experienced anything regarding m-protein, Multiple Myeloma, or Smoldering Myeloma or any of the related plasma cell dyscracias. So, this is why I am making this video! For any young person who just found out they too have MGUS Or a monoclonal gammopathy and their doctor isn't quite sure what to call it yet. My oncologist didn't say, "Yes, it is MGUS." She pretty much said it isn't Multiple Myeloma It's not myeloma yet It is just a small amount of protein.
But in those six months before seeing her I had several test done and my test were up and down and crazy in this time. My blood counts were crazy. What led to seeing the rheumotologist was that I was having a lot of symptoms. And the one thing you see a lot from doctors regarding MGUS is it should be asymptomatic. However, what led me to get the diagnosis I was very symptomatic. I was having numbness, which I have been having numbness for a few years now.
And peripheral neuropathy usually effects your hands and feet which is something I was experiencing. But I also have my right ear which has been numb for almost two years now. I also have pains on the sides of my head and numbness, random numbness in my head. I have a lot of symptoms! Doctors have not found anything wrong with me outside of some hypermobility, some genetic stuff.
They really haven't found anything that can be attributed to some of the neuropathy and some of the other issues that I have been having. The only thing wrong with me is MGUS. And that, to me, shows me -and I've seen other messaged boards- through Myeloma Beacon and some other myeloma related message boards there are some people who have symptoms with MGUS.
It does happen! I have searched, scour the internet and there are some doctors who even say that is possible as well. So it kind of validates what I am going through. As I've said, it has been years and I'll make a video regarding all the symptoms I've had and my progression towards getting my diagnosis.
And everything that has happened. I spent two straight years sick. My blood counts were way off. Everything was just really, really off with my body. All these years and all they've found on top of the hypermobility stuff is MGUS. Or the monoclonal gammopathy. So here I am at 28, with a disease that can progress to Multiple Myeloma, POEMS syndrome or Amyloidosis.
I have IgG Lambda type which I know is kind of good, especially when they are thinking of high risk factors. I think, I may be wrong so someone correct me if I am, if you are IgM or IgA you are put on a higher risk of progression than an IgG. Right now I am just IgG Lambda, I only have one cell that is cloning itself. I don't have multiple clonal cells. I know some people may have IgG/IgA Or a lambda/kappa clonal thing going on. I do not as far as I know, however I do have high kappa in my free light essay, I am not sure, but maybe that may mean that if I do progress I may progress to Amyloidosis or something.
However, right now there is no end organ damage. My skeletal system is good. From what I understand from previous x-rays I've had my spine is in great shape for the most part. Especially my lumbar spine. I am pretty close to 6 feet tall and people who are tall may attest to this, you can get a lot of joint issues and back issues, and degenerative disease.
I do not. So I'm lucky in that regard. I also know a lot of people who have MGUS tend to have issues with osteoporosis, I do not have any issues with osteoporosis. Or any degenerative things going on with my joints. As far as what I see from my x-rays or what I know from getting my results back.
I did have a sonogram of my heart because I have a history of fainting. Standing up and my vision going black, things like that. They did not find any amyloid deposits in my heart. There is no thickening, things are working well, so that is just something I grew up with.
I kind of figured it wasn't Amyloidosis but they just wanted to be sure. It has been a journey, it has been hard finding information, or other people who have MGUS. Especially younger people. I am not saying that to be discriminatory towards older folks However, a lot of the information I see for everything regarding the m-protein and monoclonal gammopathies, they're all for people who are 40 and older.
I have yet to see a YouTube video from a younger person about this. I have read a couple things on Myeloma Beacon and some forums from younger people. But I haven't really seen a lot information... It is very isolating, and confusing, and hard as far as you know being the only one.
Or the only one that you can actually see. So this is why I made this video And if you are struggling with your recent diagnosis or if you have a similar diagnosis or if you have dealt with this diagnosis I want to hear from you! What are your experiences? Do you have symptoms as well? What support groups do you use? So I can check them out myself! Anything you can give me as someone who is relatively new to the diagnosis To monoclonal gammopathies, and myeloma related diseases that would be great! I plan on making more videos just sharing my stories so that the next time someone who finds out they have this they can find my video. They can see with their eyes a face and a story and a name. And hopefully they feel even if for a moment, even though it is trivial - seeing a video - they at least know for a moment that they're not alone. They are not suffering alone. There are other people who are alive and well and they're not crazy! They have symptoms too! It happens and let's support each other. So, thank you so much for watching this! Thank you for taking an interest and please comment if you have any advice for me. Because I would love, love, love more information and a community to reach out to.
Thank you so much guys, Bye!.
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