Hi! My name is Brittany and I have MGUS which is also known as monoclonal gammopathy of undetermined significance. Which is the mouthful and it's hard to say and I'm happy I didn't fudge that for you guys. So, if you're watching this I assume that you either have MGUS, you know somebody who has MGUS, you are curious about MGUS, or you just kind of went down the youtube rabbit hole and you ended up here. Regardless of how you got here I'm happy you're here! So, what is MGUS? In layman terms and regular "everyday people speak" I would say it is your bone marrow is DEFECTIVE.
You have a little antibody that should have been destroyed because it was not working properly and instead it's cloning itself. So, simplest terms and simplest way I could put it that's MGUS. MGUS is different for every person who has it, and that is the most definitive thing I've seen since coming to this diagnosis and learning about em Gus and monoclonal gammopathy and all of it. MGUS is a plasma cell dyscrasia which pretty much just means your plasma cell is defective and all of this is housed in the bone marrow. It's also in the category of blood cancers, but it's all stemming from the bone marrow.
My specific type of monoclonal gammopathy is IgG lambda, everybody will be given a different kind of [broke off from train of thought] you know, you may have IgG kappa you may have IgM... What is the other one? IgA!! lambda/kappa is usually what your assigned [light chains with Ig heavy chains] because that's the one that's going crazy. The biggest problem though, is that i think most people who have monoclonal gammopathy of undetermined significance is we can't really get a for sure answer as to what's going on with our bodies, because it does affect everybody differently and every doctor has their own experience which dictates what they tell us. I've - in my own research - come across three schools of thought from different doctors regarding MGUS and whether or not it's cancer, and what you should do or think or feel about it. The first school of thought and group of doctors are once I say MGUS is cancer.
Now, I don't think they say this as in, like it's time to panic now, I think what they're saying is by definition cancer is a cell that's dividing and not getting destroyed like it should be. One of your cells is defective it's a cell that's dividing uncontrollably. I think that's where they get their definition of this and this is where they form their opinions.
They view it as the first step to the myeloma cancer so MGUS, smoldering myeloma, multiple myeloma, and it's usually a progression like that. The second school of thought and doctors are ones that say it's a pre cancer, so they say, "It's not quite a cancer now. It's benign for now you might feel weird from it but it's not killing you. So, it's not cancer but it can be later." Doctors say this because they don't want to say it's full-blown cancer because they don't treat .There is no treatment for MGUS and there's no way to, kind of, reverse MGUS. They don't really know why, in the first place, that it happens to us. But it's precancerous, meaning it's not anything to be alarmed about now - but it may be later.
The third school of thought, and these one's I call the "freakin butt heads". They're the ones that say it's nothing and then it's benign and it's completely symptomless and just don't worry about it's not even worth it, just don't worry about it. Now, the first doctor that found my M protein was that doctor and he didn't really know much about it to be honest because he was a Rheumatologist. When he found it he didn't tell my referring doctor about it, I did. I brought my documentation and blood results back to him so he can then look at it, because he was a hematologist before getting into vascular medicine. He then decided to send me to an oncologist but in the span of time - and all the wasted test in that time - before seeing the oncologist was wasted. I could have found out a lot earlier in my time getting my diagnosis to find out it was just MGUS. I say that with kind of like a smirk and a wink because "just MGUS".
I guess it's just like me saying, "saying if you want to really have cancer MGUS isn't the worst one to have because it's not killing you" and I say all that was a lot of sarcasm. I'm sorry if that's a little offensive, I am NOT a doctor just a patient and I'm sharing my experiences. So in those three schools of thought, I think I kind of fall in the middle of the first two. To be honest I've had a lot of symptoms regarding MGUS. Neuropathy and pain and fatigue... Not everybody does. Some people are completely asymptomatic and they don't feel anything and they don't know that anything is going on with their body. They just find out by accident.
Other people have a lot of symptoms which is the driving force in seeing doctors in the first place. Then when they find out something's wrong they went through the whole list of diseases that it can possibly be, every test known to man and the one thing they have found is MGUS. In my humble opinion, and it truly is just my opinion, if you went through all of that stuff - and all of this stuff I'm dealing with - and the only thing wrong is MGUS then you have to put those symptoms into the MGUS bucket there's nothing else that could be. The cause of what we're going through and you would see on a lot of forums - and I encourage you guys to go and meet other people who have this disease and talk to them. And with those who have even walked the path of progression, and really get perspective from them.
Some of them will tell you that they didn't have any symptoms but others will say there are for sure symptoms with MGUS. It's terrible and depending on the person - some people are a lot older - so maybe when they have symptoms they don't realize they're having symptoms from MUS they just think it's because they're in their 60s and 70s and 80s. Whereas somebody like me in their 20s, you should be bubbly and going all the time and feeling great, when I have neuropathy in my hands and feet for the last few years. I have a right ear that's been numb for the last two years as well as a numb head, a lot of pain, you know that there's something going on. So, I am making these videos because, one - I did not have any face to see when I searched out this disease.
I saw doctors and then I saw some forums. I did not see any youtube videos regarding MGUS and I just want to put these videos out there to search for a community for myself because I am relatively new to the disease. I also want you guys to see me and go, "I'm not alone there's somebody out there who knows what it's like to be me!" If you're young please comment, get a hold of me, I want to talk to you because I have not met a single person my age as of yet. I've had a lot of doctors since getting my diagnosis tell me, "you're my youngest patient". I encourage all of you who are looking for a community please find one get ahold of me and I also encourage you if you have a doctor in this third category saying it's not a big deal, it's not anything to worry about, they're lying or they're ignorant. You need to find a doctor who is knowledgeable and who will run all the necessary tests to know what your status is. Whether it's truly MGUS or maybe it's something different - and if it's any of these plasma cell discourages related to the M protein. It's important you know where you are as far as your disease and you are knowledgeable as to what your protein level is.
As to what type of M-protein you have. Whether or not your kidneys are functioning. If you have amyloidosis. If it's poem syndrome. You need to know where you're at and then you also need to have a doctor that's willing to discuss that with you and share that with you so in the future when you come up [for an appointment]- because every year after you get your diagnosis, and you're stable, every year you have to go back to the doctor to get checked. You should know enough about your numbers and where you're at to know whether or not you're progressing. If there's any change whether positive or negative. Just know MGUS isn't the end of you story.
It's not a terrible, horrible thing that's going to ruin your life. I've read a lot of people who stress and worry about MGUS and I'm not saying it's something little, either, or something to belittle - it's very much a big deal, but you could still have a good and wonderful life. I consider myself lucky, and it sounds terrible saying "lucky" because I wouldn't wish this on anybody. I feel I am lucky knowing that there's something chronic within me that may take my life and I can live my life knowing that I do not have forever. Even if it doesn't progress i still know that it could at any moment. You never know and I could do all I can, but it still doesn't mean I can avoid it.
I know that I don't have forever. I can live each moment like it's my last and I can love my family like each time I see them is my last. I can really pursue my life in a way that I should pursue it in the first place because I know I don't have forever. I do feel a little bit lucky because I do have that perspective that some things that happen in life aren't a big deal or not worth stressing over.
And I know now that all along I should have been pursuing my dreams and now that I have this - whatever this is - MGUS. Now that I have this I have that Umph that I need, where fear used to hold me back, I don't have it anymore because I'm more afraid of dying and not reaching my goals and my dreams and I'm afraid of not loving my family enough. Use this as an opportunity to live your life and not be scared because you may never progress! The small chance you do, doctors have come up with some awesome treatments for prolonging life and to even go into remission for several decades. It's possible.
It's a fight and every day is going to be a fight not to get caught in negative thought patterns. I encourage you to just reach out and find a community. And if you have a doctor who is not taking this seriously contact multiple myeloma Research Foundation they helped me when I needed to find a doctor nearby and I'm sure if you get ahold of them they will help you. You need a doctor who is knowledgeable, who will do what they can for you, and answer any and all questions because your health is important. Knowing your status in MGUS and knowing your risk of progression is important. So, if you have any information for me, any Corrections for me, any thoughts? Share them with me! I'm also looking for a community of people. I want to meet any young person there is out there, I am 28 years old and I've been told so many times that I am the youngest patient they've met [from many doctors] and from people in the MMRF. So please get in contact with them if you need help.
Get in contact with me if you want a community - if you want to talk to somebody who understands where you're at. And please comment below if you have any information or Corrections for me. Please, if you know of a community I can join and get involved with link that below, too. I thank you guys so much for watching this and just stay hopeful because MGUS isn't the end of your story. It's not the end of the road and progression will not be anything that you really have to fixate on. We all die eventually and we all have to deal with really nasty diseases and illnesses, this is just another thing that we humans have to deal with.
I'm not trying to belittle this experience or your fears, I'm just saying there's no point in fixating on it either. Just know what's going on with you is important and what you're going through is important and how you're feeling is important. But also know that your life isn't over and you should be out there just pursuing happiness in whatever form you can, and then just enjoy your family and enjoy the ones you love. I hope you guys have a great day! Thank you so much for watching and I'll see you guys later!.
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