I’m 60 years old and just recently diagnosed with MGUS. I had symptoms for about three years and many tests, MRI etc. before my m-spikes were detected. It is frustrating to me to have these symptoms and not be involved in a treatment plan beyond ibuprofen and blood monitoring. I am so glad that I came across your video. Most website and video say that MGUS is asymptotic. In my case, it’s not.
I’m 37 and I️ was just diagnosed with IgM MGUS. I’ve had symptoms, too...for years! Thank you for sharing your journey. I’m hoping more research will be dedicated to this condition for all of us! Prayers.
I know this was posted years ago but I'm hoping you see this... how were you diagnosed? What was coming back that showed something was off and what were your symptoms? I always have a high igm and high wbc and something came back abnormal and my nuero dr is very concerned and is going to reach out to my hematologist... I already have lupus but something else is going on and my dr mentioned something about mgus and I have no idea what that means and I'm worried
Hi Britany! It’s Jen. I am older than you, but “lost” the end of my youth to a whole lot of illness that resulted in a diagnosis of MGUS at 38. Like you, I remain focused on love and gratitude, happy to have a beautiful family and a home we have built together through the years. However, illness came and interrupted the “race” of life I was running; my lifestyle has been radically altered! To think that I was living my dream, simple and real, in all authenticity, and that now my days are often passed by resting and watching life go by through the window, is bizarre. I can no longer do the work of a labor intensive lifestyle. We have grown our own food and allowed the seasons to dictate the tasks. My family has covered for me, picked up the slack, and carried on our traditions. Sitting idly by is far more challenging than carrying the weight. But I never envy my husband for a moment. He cares for me tenderly, as one of the children. I have dreams in which I search for the lost mother, never recognizing that she is me! I read a lot. Good films help to pass the time and I find they stir emotions so that I can laugh or express myself well. After almost a decade of fighting for my health and watching my life crumble around this unreliable body, I am beginning to engage with a new normal. Though I cannot begin to define it or imagine the goodness it may hold, I can finally embrace my future. The battle remains. An unreliable body makes every plan a risk and causes my participation to be a liability for everyone involved. I grow braver and more vulnerable with each success. We are created to live together and we cannot create community by myself! The passing of time is helping me to find contentment in weakness while I allow others to prove themselves strong. The test is not mine alone. 🌱Be well, Friend. ❤️Jen
Jen Eaves wow! Thank you so much for your thoughts! I am sorry you have to endure such hardship and battle this fickle disease. It is so much more than "just MGUS" and support for those of us living with something less than MM is sorely lacking. I am so happy your husband is a gracious loving man! I know mine has been a saint as well and has never made me to feel as though I am a burden to him. I am thankful in today's world there are people who still hold their vows and love unconditionally, it is a gift. I loved reading your story and I look forward to hearing more from you! 💖💖 Much love, Britney
I was diagnosed at 32 and I’m now 43. I have had an endless barrage of symptoms that I’ve been told by several doctors that it isn’t from MGUS , yet they have no other explanation. Recently I have developed seizures. And nobody has any explanation for me developing seizures at this point in my life but “it’s not MGUS!” But nobody can give me any answers or explanation for why I would develop seizures at this point in my life! I have severe neuropathy. I had nerve conduction test done that shows nerve damage throughout my body. “Not MGUS!” But no other explanation! I had one doctor that was not a hematologist admit that it was highly likely that my symptoms were from the MGUS and he sent a note to my hematologist but it was disregarded. I have seen several different doctors and it seems like they all just read the previous doctors notes and go along with whatever they said. I have also developed heart valve disease, I keep getting plural effusions, and I also have severe bone pains. At the start I had IgA kappa M-spike and now my IgG is also showing an M-spike. So I have 2 M spikes and a barrage of symptoms but it’s not from the MGUS?! Seriously?! If it’s not from the MGUS then please tell me what it’s from! Doctors! 😡😤
I am 55 and went to rheumatologist for achy hands and he made me appointment with oncology, I’m a happy dad, with 4 boys a beautiful wife of 25 years, I’m worried, but I have UA-camd this to death, your video was so good and inspiring, I subscribed to your channel, please keep doing videos - thank you
I cant thank you enough for this video. I'm 32 yrs old. I was just diagnosed with MGUS from my rheumatologist yesterday. I'm igm type. I've been referred to a hematologist-oncologist. I've been so sick for over a year and no answers yet
I'm so glad that I saw your video! I have been diagnosed with MGUS just recently, however I have had severe fatigue and joint pain along with strange shooting pain for the past 2-3 years. I have read so many articles on the subject and they pretty much say there are no real symptoms. I do have arthritis along with this, but the symptoms I have been experiencing have really made me so frustrated. The only thing that is making me feel better is having the diagnosis. I really appreciate your thoughts and your story! Thank you and God bless!
Recent studies have shown that there are "symptoms" associated with MGUS, however they aren't life threatening and aren't considered a major issue. Thankfully, my oncologist took my symptoms seriously and worked with a gastroenterologist and a neurologist to get me better.
I have MGUS, DXed two weeks ago. I have probably had it for at least 14 years. Shoulders regularly pop out of joint. Have had blood clots, including two PEs. Twice with pneumonia for no obvious reason. I am an now old geezer--63--but have had the earliest symptoms for at least 14 years.
Hi hun. I’ve got lots of health issues, but this is one of the newest diagnoses on the plate....yay! Lol thanks for the video it’s very good. I’m IgG kappa with suppression of IgM- waiting for referral to haematology. Right now I’m grateful it’s not showing as developing to MM as I’ve got plenty of other health issues to keep me busy. But I figure with my medical history no matter how unlikely they say it is, that rare thing always seems to happen to me. Lol yeah I doubt it’s “just MGUS” I’ve got several pre cancers going on or in my past. I’ve got so many symptoms that it’s hard to label which disease causes what. I have rheumatoid arthritis and several others including lung disease. There has been so many red flags ignored since I got sick five years ago at 35 x
I am 39. I was diagnosed about 3 days ago and had to go to hospital for more testing. My symptom's went on for about 8 /9 years and they just now finding this. My symptoms are bone pain, infections, hand and feet numbing, confusion and fatigue. My doctor thought it was a sinus so sent me to ENT, Gastro doctor and allergist. Allergist found it. Thanks for the video this was very good with helping me understand it a little better.
Thank you! Been suffering for so long and no one knows what's going on! I've been so very frustrated... I "just have MGUS". I'm 38 years old, cancer runs like a rabid dog thru my family. According to the hemo/ oncologist I've nothing to worry about... regardless of the symptoms. I have a neurologist that found the m- spike. I see him in 2 days and I hope he will address my symptoms at the very least. Thank you for sharing your experience.... and you're right... my dad said (when losing his fight with pancreatic cancer) "that no one makes it out of here alive." Fear of dying I do not have, my fear is losing all quality of life in the mean time. Again, thanks for posting this vid Britney. God bless.
Attila Sarfi -how are you? I am Jen- My fear, too, is about losing my quality of life vs. dying. It’s no fun to feel crummy and to think about decades ahead of suffering. Be well! 🌱
Sorry for missing your comment! I hope you're doing well!! Thankfully more and more oncologists are admitting that MGUS is something that needs treatment and management. It may not be treated like a cancer, but we need help with pain and decreased energy. If you have any questions or are looking for natural remedies just ask away! I've been experimenting a lot lately and found some things help! 😊
ctruett1234 I am so sorry you have lost a loved one to multiple myeloma... it is a very ugly disease. I find solace in knowing it may never progress beyond MGUS and scientist in recent years jave made HUGE advancements towards a cure! Hang on to hope! ❤
I think I had MGUS for about 20 years before being diagnosed in 2012. I went through chemo therapy and a stem cell transplant, which i responded to very successfully. I have been in complete response since, so appx 7 years.
Hi I have mgus found out about 4weeks ago I'm 51at first I was a mess my daughter is only 15and I want to c her grow and marry but this is not going to stop me living life is precious and it simply won't control my life x
Hi Britney how r you today I still have bad days when the fact I have mgus gets to me but life is life and u can't change it u sound positive and that is important as I believe in positive thinking at times tho it does play with yr mind may sound a bit morbid but we're all going to die one day yr going to b alright can I ask wat type of mgus u have
I think I'm the only one in the UK with mgus, diagnosed Xmas last year, I've found the only place for info is the likes of you on here from the U.S so thanx for your time, cheers paul
Hi I'm kev from England I have mgus diagnosed 6weeks aho m spike kappa must admit I was a mess for a while but life is life and u must live it its very rare it for it to progress unfortunately some people do but y should that b me or you be positive
I hope u are well.I am in the process of getting staged for either MGUS, SMM, or MM.Iam sorry u were hit with this disease at such a young age.As it is a disease that primarily affects the old farts like me.I am 65 yo, Anyhow, it is better to have MGUS THAN the full blown MM.I hope u r doing well since this video came out 4yrs ago. Thanks for sharing and God bless.
You can perhaps research curcumin with piperine as a plant-based therapy. Important to remember not all MGUS progresses to cancer, but also most lymphomas/myelomas I think start as MGUS. PS. I'm in the 'old fogey' category I guess, at 65 - MGUS is most often detected in my kind of age group. The rock singer Ali Handal has Waldenstroms, yet still rocking and leading a very full life. She's much closer to your age.
I am 68 and just found out I have MGUS, no symptoms, and my doctor says it could lead to bone cancer, but generally low risk. My doctor said will need a blood test every 6 months. I do have stage 3a CKD also, but it's holding. Bur only showed up in my last blood test, as he gets my blood tests for everything every 3 month. As the doctor says, nothing to worry about as yet, low cancer risk. The good thing if it turned out to be cancer, as its caught early then a great chance of curing it. Had a blood clot in my left leg 3 years ago. At least I guess being 68 and MGUS at least may die of something else before MGUS gets me. Sorry to hear at Young age you have it, as its usually an old person's disease.
Thank you for a wonderful video. I'm three days away from seeing my neurologist to go over all of my test results. I got a copy in advance and saw that I have the "Monoclonal Restriction Consistent With IgG Kappa." Because I have so many symptoms, I fully expect to have MGUS at least or full-on Multiple Myeloma at worst. My kidneys are already affected and I have chronic back and bone pain along with polyneuropathy. You gave me some great insight here and I appreciate it.
Hi there! Sorry you have been dealing with so many symptoms! I hope you're doing okay. Please update on how you are and what you learn if you'd like. 💕
I have quite disabling neuropathy + MGUS. There is no link proven but it can't be excluded, partly because it's at the frontiers of medical science; there's not a huge amount of research because it's not that common.
They've recently changed it being "symptomless" to "benign symptoms". I've been missing from this platform for a few years, I am a biomedical engineer undergrad who is currently a study participant and also planning my PhD research on Myeloma, Amyloidosis, POEM syndrome, and MGUS. There is currently published research stating MGUS as precursor conditions can and do cause symptoms. Reason there hasn't been a large body of evidence is study participants for Mayo were 50 or older. That study was decades ago and is the one used for most statistics regarding this subject. These patients present differently and have several comorbities, as most MGUS studies only followed older patients and not young. Promise study through Dana Farber is tracking with young participants and following their disease progression. If you aren't already a participant I highly recommend!
Hi, Thank you so much for this video. I am going through many many tests right now. I am 36 years old and have a lot of neuropathy. as well. The oncologist is looking at either MGUS or waldenström's macroglobulinemia diagnosis. I have a bone marrow biopsy next week. I guess if there are less then 10% cancer cells in my bone marrow then it will be MGUS or if it's more then WM. Thank you for making this video it really helped!!
Hi Britney, I was diagnosed when I was 27 I am now 45, I also have IGG lambda. I would love to talk with you, also to let you know what plans the doctors have for me here in Boston at Dana Farber.
Thank you so much for this video. I'm 25yo and I've just found out last week that I've got an M-spike and that my Immunfixation is positive (IgG Kappa). Nothing more until now. Next week I'm having an appointment with an oncologist and I'm very happy to have found this video, because it's the only one I can relate to. All the doctors on youtube saying that the progression to MM takes 20-30 years, so there's nothing to worry about make me even more worried, because I really don't want MM, even at the age of 45 or 50. Is there any way to get in touch with you, where we could talk more privately? Facebook maybe? Take care! Magdalena
Magdalena N I am so happy you found this as well! I put this out there because I know there is so little out there from actual people living with MGUS. facebook.com/britneyrue That is my personal facebook, i don't typically give it out but feel free to message me for more information, and you can "friend" me as well. facebook.com/groups/mgussupport/ ⏫⏫ this a a group you can join on facebook for MGUS patients. It is a private group, they have a lot if resources and information to share. The members have been so kind, encouraging, and uplifting. I highly recommend connecting to them as well. It is one of the best ran groups on Facebook in my opinion.
Celesta Popa I have found resource pages on FB but nothing really helpful or uplifting for MGUS patients. The best community i have found for MGUS is on myelomabeacon.com. They have message boards for every stage of the disease and a lot of people who are 'veterans' and can ease any worry you may have. 😊
Thank you for your video! I am 30 yrs old and going in for my bone marrow biopsy tomorrow. They told me it is either MGUS or MM. I am terrified of the biopsy and the idea of either of these. My oncologist said I was his youngest patient with this also. Did they do a biopsy on you? I'm assuming so. Any advice?
Amanda Brock I am so sorry you are going through this! There is no real good advice about getting through the discomfort of a bone marrow biopsy... It sucks! But it is over really quick and you maybe a little tender for a few days afterward. If you are really nervous the doctor may agree to put you out or dope you up really good. 😄 However, I have a ton of advice for dealing with this on the emotional end. If they determine it is MGUS that is very "good news" because it may never progress, especially if you are a non IgM type and have normal light chains numbers and ratios. If it turns out you have MM there have been amazing advancements in treatment and I have seen many instances of young people responding very well to treatment and have zero evidence of disease afterwards. There is also a chance you could have smoldering myeloma which is a weird mix if MGUS and MM, you have a lot of the blood issues and maybe some CRAB criteria but not all. I know this is all really overwhelming. If you have any questions you can contact me on my facebook page or email me at britneysmitley@outlook.com. I also think joining a support group or talking to other people living with paraproteinemia has been a huge help in seeing how far modern medicine has brought all Myeloma patients. 😊
amii loulou wishing you luck with the appointments!! A year after my diagnosis I have a better outlook on the diagnosis. MGUS can be triggered by a virus, Lupus, Rheumatoid Arthritis, and is known to resolve on its own. Hoping you get good news!! I will be keeping you in my thoughts ❤❤
Hi Brittney. So happy I came across your video cuz I too have MGUS I got diagnosed with it a few years ago haven’t really had any symptoms Seeing an oncologist now and in the middle of doing some tests bone marrow biopsy , and also pet scan , did u also do those tests. My oncologist is also considering chemo for me which what I thought was absurd ! Just wondering your thoughts on that.
Felice Benami thank you for reaching out! I was diagnosed with paraproteinemia last year, so it has been just over a year. I am highly symptomatic and my doctor doesn't call what is wrong with me MGUS, but because it is not Multiple Myeloma it is just easier to call it MGUS. . So your doctor may want to do chemo because they feel it may reverse your condition. It is highly unorthodox to get chemo for mgus. Maybe being it up with your oncologist and see why they want to try chemo. Maybe new studies are showing remission before progression is possible? Either way, my prayers and thoughts are with you!! ❤❤
Hi Britney I have some questions if you mind is there a way I can private message you? I'm wondering if I may have this my nuero is concerned since something came up in my blood work... was wondering what was coming up for you? And what blood test can I ask for... I always have a high igm and something about a weak gamma migrating paraprotein was identified I have no idea what this means but now I am worried and haven't been feeling well for the past 2 years
jazdj04 I am sorry to hear you've recently been diagnosed! I am almost at my year anniversary. Thankfully there are many resources and a growing knowledge on MGUS. MGUS doesn't always mean multiple myeloma or cancer. 😊
After leaving this message I felt that I should let tyou all know!!! At Dana Farber there are clinical trials running to treat MGUS please everyone look into this.
Thank you for putting this out there!! I am aware of their pcrowd study, and I am participating in that... If anyone can join a study please do! It helps find markers and possible treatments!
Hi thank you for sharing your story. Have you done anything different with your diet or taken any supplements for this? I’ve read that circumin may help with stopping progression
Hi Mana my dad got diagnosed with MGUS a few months ago. He has a protein level of 20. Which the doctor said its pretty high for someone with MGUS.. just wondering what protein levels are you at?
MGUS is supposed to be symptom-free.. If you have symptoms, according to what I've read, your diagnosis should be something other than MGUS. - Perhaps , "smouldering -" whatever your particular variety leads to.
Signs and symptoms of MGUS MGUS does not usually cause any symptoms. But a small number of people with MGUS have numbness or tingling in their hands and feet (peripheral neuropathy), or problems with their balance. This may be because of damage to their nerves caused by paraproteins in their blood. People with nerve symptoms that cause them problems may be referred to a neurologist. This is a doctor who specialises in conditions of the nervous system.
Hi again , Britney! I noticed in one of your postings that you said that mgus can be caused by a virus and could potentially resolve on it’s own. I was wondering where you found that information and if you can provide a link to any info. on the web about this. I have a dear friend that was diagnosed with this 6 months ago and the hematologist isn’t providing much information. The doc said that the only thing he is concerned about is if the igg levels increase. I have no idea what that means. I’m wondering if my friend should get another opinion.
lainey ruocco I have neuropathy, bone pain, and weak immune system. I know it is different for every person with MGUS. I also have co-conditions and issues that stem from genetics and environment that could have played a role in developing MGUS. I do have weird free light chains that are always changing and auto-immune issues, which may stem more from genetics than MGUS. However, through lots of reading and talking to ither patients it looks like there is a very strong correlation with defects in our immune system and developing MGUS.
lainey ruocco I have whole body weakness but with having other conditions I am not sure if it from MGUS, it is hard to tell what causes what sometimes. 😊
HI, thanks for your respnnse....I mainly have bone pain, severe tiredness and severe balance issues. Any of this for you? You are way to young to be suffering......Can you join a gym?
lainey ruocco With how I have learned to live with MGUS and my comorbidities, I don't feel like I am suffering. Most days I feel pretty good, some days and even weeks are terrible, but I am also learning to cope with my new "normal". As long as I do not over exert my body I stay well. I walk and do yoga, I run around with my kids for exercise. I do have to be careful with how much I exert myself because of a genetic heart condition. I will be making another video soon updating and sharing what I learned my first year with MGUS. I also have another video on my channel sharing about my comorbidities. 😊
You can have light chains only MGUS and Myeloma. It is a rarer presentation but it is a thing! I don't know much about it. If I find something on it I will comment with a link on it.
@@BritneyNicoleandMyeloma I have been told I have this protein and a 99 percent of developing it starting in 2014. I don't know where to start with the blood test, multiple doctor appointments, the pain, oh and don't mention a the different lumps appearing in different areas of my body. I got kinda frustrated with the doctors because I wanted more answers. So I glad to hear there are other young people like me. I'm in my mid thirties.
On way to oncologist next week. 0.6 igG kappa, having symptoms. Only had spep and immunofixation test so far. Not sure what will be next. Have symproms of fatigue, horrible ongoing headaches and body aches everywhere.
www.dovepress.com/polyclonal-free-light-chains-promising-new-biomarkers-in-inflammatory--peer-reviewed-fulltext-article-CBF This is very interesting of understanding free light chains.
MGUS is a condition is which abnormal cells are growing within the bone marrow. These cells do not behave or act like typical cells which experience apoptosis (cell death), these cells stay and even grow (divide) until they become detectable in a blood test. By a very simple and layman definition alone, MGUS can be classified as a cancer... However, most doctors are very careful not to call MGUS cancer because people can live a long time with the disease and some people experience very little change in their health because of it. There are many people who also develop MGUS and then it goes away. The body's immune system does the job by identifying these rogue cells and destroys them. The problem with people with MGUS that stays and progresses to other plasma cell dyscrasias is the immune system doesn't make that distinction. Only a(n) Hematologist/Oncologist can diagnose this disease and properly assess what the cause may be and if you have markers that indicate a risk of progression to myeloma, amyloidosis, or other diseases. Every MGUS/myeloma patient has their own unique markers, risks, and chromosomal makeup that lended to developing this health issue.
@@BritneyNicoleandMyeloma thanks for the information I'm quite confused since I had this ive host problems since I got it how about you thanks information helpful but is it a cancer or not?? If so who's says it is??? If you don't mind me asking ??? I hope you OK as you can be
Amazing video....very informative 😳👍...I have exactly the same, MGUS IgG, with many neurological symptoms....saw 1.000.000 doctors, pfff Like you say not everyone takes this seriously...very sad ! 😌
![Young Woman with MGUS (MONOCLONAL GAMMOPATHY)[CC]](http://i.ytimg.com/vi/JfZh8wiCWAk/mqdefault.jpg)
![Young Woman with MGUS (MONOCLONAL GAMMOPATHY)[CC]](/img/tr.png)
I’m 60 years old and just recently diagnosed with MGUS. I had symptoms for about three years and many tests, MRI etc. before my m-spikes were detected. It is frustrating to me to have these symptoms and not be involved in a treatment plan beyond ibuprofen and blood monitoring. I am so glad that I came across your video. Most website and video say that MGUS is asymptotic. In my case, it’s not.
I’m 37 and I️ was just diagnosed with IgM MGUS. I’ve had symptoms, too...for years! Thank you for sharing your journey. I’m hoping more research will be dedicated to this condition for all of us! Prayers.
Thank you for reaching out! Prayers for you too!
Hey guys I'm 34 just got diagnosed with IGM MGUS and Ive had symptoms for 10 straight months. Very nervous
Keep a watch on blood Calcium levels, Creatinine , chloride & urea, iron and haemoglobin and bone density.
I know this was posted years ago but I'm hoping you see this... how were you diagnosed? What was coming back that showed something was off and what were your symptoms? I always have a high igm and high wbc and something came back abnormal and my nuero dr is very concerned and is going to reach out to my hematologist... I already have lupus but something else is going on and my dr mentioned something about mgus and I have no idea what that means and I'm worried
Hi Britany!
It’s Jen.
I am older than you, but “lost” the end of my youth to a whole lot of illness that resulted in a diagnosis of MGUS at 38.
Like you, I remain focused on love and gratitude, happy to have a beautiful family and a home we have built together through the years.
However, illness came and interrupted the “race” of life I was running; my lifestyle has been radically altered! To think that I was living my dream, simple and real, in all authenticity, and that now my days are often passed by resting and watching life go by through the window, is bizarre.
I can no longer do the work of a labor intensive lifestyle. We have grown our own food and allowed the seasons to dictate the tasks. My family has covered for me, picked up the slack, and carried on our traditions. Sitting idly by is far more challenging than carrying the weight. But I never envy my husband for a moment. He cares for me tenderly, as one of the children. I have dreams in which I search for the lost mother, never recognizing that she is me!
I read a lot. Good films help to pass the time and I find they stir emotions so that I can laugh or express myself well.
After almost a decade of fighting for my health and watching my life crumble around this unreliable body, I am beginning to engage with a new normal. Though I cannot begin to define it or imagine the goodness it may hold, I can finally embrace my future.
The battle remains. An unreliable body makes every plan a risk and causes my participation to be a liability for everyone involved.
I grow braver and more vulnerable with each success. We are created to live together and we cannot create community by myself! The passing of time is helping me to find contentment in weakness while I allow others to prove themselves strong. The test is not mine alone.
🌱Be well, Friend.
❤️Jen
Jen Eaves wow! Thank you so much for your thoughts! I am sorry you have to endure such hardship and battle this fickle disease. It is so much more than "just MGUS" and support for those of us living with something less than MM is sorely lacking. I am so happy your husband is a gracious loving man! I know mine has been a saint as well and has never made me to feel as though I am a burden to him. I am thankful in today's world there are people who still hold their vows and love unconditionally, it is a gift.
I loved reading your story and I look forward to hearing more from you! 💖💖
Much love,
Britney
It's the 2nd time I've watch your video. I'm a young 78 years old male with M G U S . Just listening to you makes me feel on top of the world
I was diagnosed at 32 and I’m now 43. I have had an endless barrage of symptoms that I’ve been told by several doctors that it isn’t from MGUS , yet they have no other explanation. Recently I have developed seizures. And nobody has any explanation for me developing seizures at this point in my life but “it’s not MGUS!” But nobody can give me any answers or explanation for why I would develop seizures at this point in my life! I have severe neuropathy. I had nerve conduction test done that shows nerve damage throughout my body. “Not MGUS!” But no other explanation! I had one doctor that was not a hematologist admit that it was highly likely that my symptoms were from the MGUS and he sent a note to my hematologist but it was disregarded. I have seen several different doctors and it seems like they all just read the previous doctors notes and go along with whatever they said. I have also developed heart valve disease, I keep getting plural effusions, and I also have severe bone pains. At the start I had IgA kappa M-spike and now my IgG is also showing an M-spike. So I have 2 M spikes and a barrage of symptoms but it’s not from the MGUS?! Seriously?! If it’s not from the MGUS then please tell me what it’s from! Doctors! 😡😤
I am 55 and went to rheumatologist for achy hands and he made me appointment with oncology, I’m a happy dad, with 4 boys a beautiful wife of 25 years, I’m worried, but I have UA-camd this to death, your video was so good and inspiring, I subscribed to your channel, please keep doing videos - thank you
I cant thank you enough for this video. I'm 32 yrs old. I was just diagnosed with MGUS from my rheumatologist yesterday. I'm igm type. I've been referred to a hematologist-oncologist. I've been so sick for over a year and no answers yet
I'm so glad that I saw your video! I have been diagnosed with MGUS just recently, however I have had severe fatigue and joint pain along with strange shooting pain for the past 2-3 years. I have read so many articles on the subject and they pretty much say there are no real symptoms. I do have arthritis along with this, but the symptoms I have been experiencing have really made me so frustrated. The only thing that is making me feel better is having the diagnosis. I really appreciate your thoughts and your story! Thank you and God bless!
Recent studies have shown that there are "symptoms" associated with MGUS, however they aren't life threatening and aren't considered a major issue. Thankfully, my oncologist took my symptoms seriously and worked with a gastroenterologist and a neurologist to get me better.
You have an amazing attitude. MGUS is just part of us, but it doesnt need to define us
Thank you for sharing your knowledge, your fears, and especially your hope. Bless you and stay vibrant.
Thank you so much for that! Bless you!
Thanks. A gift for the rest of us.
I have MGUS, DXed two weeks ago. I have probably had it for at least 14 years. Shoulders regularly pop out of joint. Have had blood clots, including two PEs. Twice with pneumonia for no obvious reason. I am an now old geezer--63--but have had the earliest symptoms for at least 14 years.
Thanks reassuring. Feels like I am living with a time bomb.
Hi hun. I’ve got lots of health issues, but this is one of the newest diagnoses on the plate....yay! Lol thanks for the video it’s very good. I’m IgG kappa with suppression of IgM- waiting for referral to haematology. Right now I’m grateful it’s not showing as developing to MM as I’ve got plenty of other health issues to keep me busy. But I figure with my medical history no matter how unlikely they say it is, that rare thing always seems to happen to me. Lol yeah I doubt it’s “just MGUS” I’ve got several pre cancers going on or in my past. I’ve got so many symptoms that it’s hard to label which disease causes what. I have rheumatoid arthritis and several others including lung disease. There has been so many red flags ignored since I got sick five years ago at 35 x
I'm sorry to hear you have dealt with so much! I hope you're doing well. 💕💕
I am 39. I was diagnosed about 3 days ago and had to go to hospital for more testing. My symptom's went on for about 8 /9 years and they just now finding this.
My symptoms are bone pain, infections, hand and feet numbing, confusion and fatigue. My doctor thought it was a sinus so sent me to ENT, Gastro doctor and allergist. Allergist found it.
Thanks for the video this was very good with helping me understand it a little better.
May I ask how it was found?
Thanks so much for creating and sharing this video! Much appreciated! :)
genapruitt thank you for watching!
Fantastic video. Especially the part about living your life to the fullest...
Thank you! Been suffering for so long and no one knows what's going on! I've been so very frustrated... I "just have MGUS". I'm 38 years old, cancer runs like a rabid dog thru my family. According to the hemo/ oncologist I've nothing to worry about... regardless of the symptoms. I have a neurologist that found the m- spike. I see him in 2 days and I hope he will address my symptoms at the very least. Thank you for sharing your experience.... and you're right... my dad said (when losing his fight with pancreatic cancer) "that no one makes it out of here alive." Fear of dying I do not have, my fear is losing all quality of life in the mean time.
Again, thanks for posting this vid Britney. God bless.
Attila Sarfi -how are you?
I am Jen-
My fear, too, is about losing my quality of life vs. dying.
It’s no fun to feel crummy and to think about decades ahead of suffering.
Be well!
🌱
Jen Eaves I see a specialist on the 26th of March and an eye Dr tomorrow to address some symptoms with my eyes (whether they are related or not)
Attila Sarfi -
Good luck with the eyes!
I need to do the same-next month.
My eyes feel bulgy, puffy, and vision is blurry.
❤️
Sorry for missing your comment! I hope you're doing well!! Thankfully more and more oncologists are admitting that MGUS is something that needs treatment and management. It may not be treated like a cancer, but we need help with pain and decreased energy.
If you have any questions or are looking for natural remedies just ask away! I've been experimenting a lot lately and found some things help! 😊
Keep making these videos. They also said fibromyalgia was “all in your head” And now it’s a medical disease.
I am a little older. I was first diagnosed at 36 and my rheumatiologist found it. I had an uncle die from MM. It scares me.
ctruett1234 I am so sorry you have lost a loved one to multiple myeloma... it is a very ugly disease. I find solace in knowing it may never progress beyond MGUS and scientist in recent years jave made HUGE advancements towards a cure!
Hang on to hope! ❤
I think I had MGUS for about 20 years before being diagnosed in 2012. I went through chemo therapy and a stem cell transplant, which i responded to very successfully. I have been in complete response since, so appx 7 years.
Hi I have mgus found out about 4weeks ago I'm 51at first I was a mess my daughter is only 15and I want to c her grow and marry but this is not going to stop me living life is precious and it simply won't control my life x
Hi Britney how r you today I still have bad days when the fact I have mgus gets to me but life is life and u can't change it u sound positive and that is important as I believe in positive thinking at times tho it does play with yr mind may sound a bit morbid but we're all going to die one day yr going to b alright can I ask wat type of mgus u have
I think I'm the only one in the UK with mgus, diagnosed Xmas last year, I've found the only place for info is the likes of you on here from the U.S so thanx for your time, cheers paul
I have had the privilege of getting messages from individuals residing in the UK. They are out there! 🖤
Hi I'm kev from England I have mgus diagnosed 6weeks aho m spike kappa must admit I was a mess for a while but life is life and u must live it its very rare it for it to progress unfortunately some people do but y should that b me or you be positive
I hope u are well.I am in the process of getting staged for either MGUS, SMM, or MM.Iam sorry u were hit with this disease at such a young age.As it is a disease that primarily affects the old farts like me.I am 65 yo, Anyhow, it is better to have MGUS THAN the full blown MM.I hope u r doing well since this video came out 4yrs ago. Thanks for sharing and God bless.
You can perhaps research curcumin with piperine as a plant-based therapy.
Important to remember not all MGUS progresses to cancer, but also most lymphomas/myelomas I think start as MGUS.
PS. I'm in the 'old fogey' category I guess, at 65 - MGUS is most often detected in my kind of age group.
The rock singer Ali Handal has Waldenstroms, yet still rocking and leading a very full life. She's much closer to your age.
I am 68 and just found out I have MGUS, no symptoms, and my doctor says it could lead to bone cancer, but generally low risk. My doctor said will need a blood test every 6 months. I do have stage 3a CKD also, but it's holding. Bur only showed up in my last blood test, as he gets my blood tests for everything every 3 month. As the doctor says, nothing to worry about as yet, low cancer risk. The good thing if it turned out to be cancer, as its caught early then a great chance of curing it. Had a blood clot in my left leg 3 years ago. At least I guess being 68 and MGUS at least may die of something else before MGUS gets me. Sorry to hear at Young age you have it, as its usually an old person's disease.
I’ve had mgus for 8 years and no symptoms at all. I’m an athlete and do very well with it.
Can you tell me if you do anything different or take any supplements? Have a friend that was just diagnosed and am looking for answers. Thx!
I’m 64,I got diagnosed at 60. I go up and down seems like every 90 days when I get checked!
Thank you for a wonderful video. I'm three days away from seeing my neurologist to go over all of my test results. I got a copy in advance and saw that I have the "Monoclonal Restriction Consistent With IgG Kappa." Because I have so many symptoms, I fully expect to have MGUS at least or full-on Multiple Myeloma at worst. My kidneys are already affected and I have chronic back and bone pain along with polyneuropathy. You gave me some great insight here and I appreciate it.
Hi there! Sorry you have been dealing with so many symptoms! I hope you're doing okay. Please update on how you are and what you learn if you'd like. 💕
Thank you very much Britney.😊
I have quite disabling neuropathy + MGUS. There is no link proven but it can't be excluded, partly because it's at the frontiers of medical science; there's not a huge amount of research because it's not that common.
They've recently changed it being "symptomless" to "benign symptoms".
I've been missing from this platform for a few years, I am a biomedical engineer undergrad who is currently a study participant and also planning my PhD research on Myeloma, Amyloidosis, POEM syndrome, and MGUS. There is currently published research stating MGUS as precursor conditions can and do cause symptoms. Reason there hasn't been a large body of evidence is study participants for Mayo were 50 or older. That study was decades ago and is the one used for most statistics regarding this subject. These patients present differently and have several comorbities, as most MGUS studies only followed older patients and not young.
Promise study through Dana Farber is tracking with young participants and following their disease progression. If you aren't already a participant I highly recommend!
Hi, Thank you so much for this video. I am going through many many tests right now. I am 36 years old and have a lot of neuropathy. as well. The oncologist is looking at either MGUS or waldenström's macroglobulinemia diagnosis. I have a bone marrow biopsy next week. I guess if there are less then 10% cancer cells in my bone marrow then it will be MGUS or if it's more then WM. Thank you for making this video it really helped!!
I have second stage ....smoldering myeloma....waiting to ignite. No treatment till it ignites. It's a waiting game.
My husband had a brain stroke at 37. That was 2 years ago. It took over a year to find a cause. It was MGUS.
Please explain your symptoms futher, ao we will all understand MGUS better.....
Hi Britney,
I was diagnosed when I was 27 I am now 45, I also have IGG lambda. I would love to talk with you, also to let you know what plans the doctors have for me here in Boston at Dana Farber.
GOD BLESS YOU....YOU WILL LIVE FOR A VERY LONG TIME......
lainey ruocco thank you! I certainly pray to be here a very long time! ❤❤
@@BritneyNicoleandMyelomaAmen. I pray you live to testify even more. You are helping a lot of people. God bless you
Thank you so much for this video. I'm 25yo and I've just found out last week that I've got an M-spike and that my Immunfixation is positive (IgG Kappa). Nothing more until now. Next week I'm having an appointment with an oncologist and I'm very happy to have found this video, because it's the only one I can relate to. All the doctors on youtube saying that the progression to MM takes 20-30 years, so there's nothing to worry about make me even more worried, because I really don't want MM, even at the age of 45 or 50. Is there any way to get in touch with you, where we could talk more privately? Facebook maybe?
Take care!
Magdalena
Magdalena N I am so happy you found this as well! I put this out there because I know there is so little out there from actual people living with MGUS. facebook.com/britneyrue
That is my personal facebook, i don't typically give it out but feel free to message me for more information, and you can "friend" me as well.
facebook.com/groups/mgussupport/
⏫⏫ this a a group you can join on facebook for MGUS patients. It is a private group, they have a lot if resources and information to share. The members have been so kind, encouraging, and uplifting. I highly recommend connecting to them as well. It is one of the best ran groups on Facebook in my opinion.
Thank you so much for answering! I already wrote to you on FB, but I cannot send you a friend request so check your other message folders, please :)
I’m 23 being diagnosed with MGUS. This is so relatable !
i noticed this was 6 years ago, how are you today?
My husband has it, your videos really heps. If youhave found a community, pls let me know. God bless you!
Celesta Popa I have found resource pages on FB but nothing really helpful or uplifting for MGUS patients. The best community i have found for MGUS is on myelomabeacon.com. They have message boards for every stage of the disease and a lot of people who are 'veterans' and can ease any worry you may have. 😊
www.myelomabeacon.com/forum/
I’m 40, found out because I was sympathetic, and a not big deal doctor.
Thank you for your video! I am 30 yrs old and going in for my bone marrow biopsy tomorrow. They told me it is either MGUS or MM. I am terrified of the biopsy and the idea of either of these. My oncologist said I was his youngest patient with this also. Did they do a biopsy on you? I'm assuming so. Any advice?
Amanda Brock I am so sorry you are going through this! There is no real good advice about getting through the discomfort of a bone marrow biopsy... It sucks! But it is over really quick and you maybe a little tender for a few days afterward. If you are really nervous the doctor may agree to put you out or dope you up really good. 😄
However, I have a ton of advice for dealing with this on the emotional end. If they determine it is MGUS that is very "good news" because it may never progress, especially if you are a non IgM type and have normal light chains numbers and ratios. If it turns out you have MM there have been amazing advancements in treatment and I have seen many instances of young people responding very well to treatment and have zero evidence of disease afterwards. There is also a chance you could have smoldering myeloma which is a weird mix if MGUS and MM, you have a lot of the blood issues and maybe some CRAB criteria but not all. I know this is all really overwhelming. If you have any questions you can contact me on my facebook page or email me at britneysmitley@outlook.com. I also think joining a support group or talking to other people living with paraproteinemia has been a huge help in seeing how far modern medicine has brought all Myeloma patients. 😊
I'm 24 waiting to see the haematologist urgently xx
amii loulou wishing you luck with the appointments!! A year after my diagnosis I have a better outlook on the diagnosis. MGUS can be triggered by a virus, Lupus, Rheumatoid Arthritis, and is known to resolve on its own. Hoping you get good news!! I will be keeping you in my thoughts ❤❤
Hi Brittney. So happy I came across your video cuz I too have MGUS I got diagnosed with it a few years ago haven’t really had any symptoms Seeing an oncologist now and in the middle of doing some tests bone marrow biopsy , and also pet scan , did u also do those tests. My oncologist is also considering chemo for me which what I thought was absurd ! Just wondering your thoughts on that.
Felice Benami thank you for reaching out! I was diagnosed with paraproteinemia last year, so it has been just over a year. I am highly symptomatic and my doctor doesn't call what is wrong with me MGUS, but because it is not Multiple Myeloma it is just easier to call it MGUS.
.
So your doctor may want to do chemo because they feel it may reverse your condition. It is highly unorthodox to get chemo for mgus. Maybe being it up with your oncologist and see why they want to try chemo. Maybe new studies are showing remission before progression is possible?
Either way, my prayers and thoughts are with you!! ❤❤
New to this getting numbers and s survey in a week
Thank you for your information 🙏
Please help. I have MGUS. I’m so scared.
I was 40 when diagnosed. I algo have IgG lambda. How are you doing?
Hi Britney I have some questions if you mind is there a way I can private message you? I'm wondering if I may have this my nuero is concerned since something came up in my blood work... was wondering what was coming up for you? And what blood test can I ask for... I always have a high igm and something about a weak gamma migrating paraprotein was identified I have no idea what this means but now I am worried and haven't been feeling well for the past 2 years
Feel free to email me @ britneysmitley@outlook.com
Diagnosed today. I'm in my early 30s.
jazdj04 I am sorry to hear you've recently been diagnosed! I am almost at my year anniversary. Thankfully there are many resources and a growing knowledge on MGUS. MGUS doesn't always mean multiple myeloma or cancer. 😊
How how are you found ja?
Do you know if igm MGUS have anything to do with antiphospholipid syndrome?
After leaving this message I felt that I should let tyou all know!!! At Dana Farber there are clinical trials running to treat MGUS please everyone look into this.
Thank you for putting this out there!! I am aware of their pcrowd study, and I am participating in that...
If anyone can join a study please do! It helps find markers and possible treatments!
@@BritneyNicoleandMyeloma does it cures mgus??
Hi thank you for sharing your story. Have you done anything different with your diet or taken any supplements for this? I’ve read that circumin may help with stopping progression
I have taken curcumin and ashwagandha root to help with inflammation
Thanks. Hope you are doing well!
I've was diagnosed with MGUS Igm 10 years ago. The protein levels have been increasing and are getting closer to smoldering myeloma.
I'm sorry to hear that!! 🖤🖤
Hi Mana my dad got diagnosed with MGUS a few months ago. He has a protein level of 20. Which the doctor said its pretty high for someone with MGUS.. just wondering what protein levels are you at?
My mother was just diagnosed
MGUS is supposed to be symptom-free.. If you have symptoms, according to what I've read, your diagnosis should be something other than MGUS. - Perhaps , "smouldering -" whatever your particular variety leads to.
Signs and symptoms of MGUS
MGUS does not usually cause any symptoms. But a small number of people with MGUS have numbness or tingling in their hands and feet (peripheral neuropathy), or problems with their balance. This may be because of damage to their nerves caused by paraproteins in their blood.
People with nerve symptoms that cause them problems may be referred to a neurologist. This is a doctor who specialises in conditions of the nervous system.
The type of protein may also lead to increased symptoms, as well as an increase in free light chains in the blood.
I just found out I have a "M" spike and waiting to see a specialist. I already have fatigue. I'm 55.
So sorry you're dealing with this! I hope you get answers and get to feeling better!
Thank you.
stefania stefy thank you for watching 💜
Hi again , Britney! I noticed in one of your postings that you said that mgus can be caused by a virus and could potentially resolve on it’s own. I was wondering where you found that information and if you can provide a link to any info. on the web about this. I have a dear friend that was diagnosed with this 6 months ago and the hematologist isn’t providing much information. The doc said that the only thing he is concerned about is if the igg levels increase. I have no idea what that means. I’m wondering if my friend should get another opinion.
I got it from a myeloma UK organization video here on UA-cam. I believe it is called "origin of a myeloma cell".
How much plasma cell percent is there in ur test for mgus???
How are you doing not seen you for a while.....
So do you have R A also.
Do u have bone pain, lower back pain, or weakness in your lets??
lainey ruocco I have neuropathy, bone pain, and weak immune system. I know it is different for every person with MGUS. I also have co-conditions and issues that stem from genetics and environment that could have played a role in developing MGUS. I do have weird free light chains that are always changing and auto-immune issues, which may stem more from genetics than MGUS. However, through lots of reading and talking to ither patients it looks like there is a very strong correlation with defects in our immune system and developing MGUS.
lainey ruocco I have whole body weakness but with having other conditions I am not sure if it from MGUS, it is hard to tell what causes what sometimes. 😊
HI, thanks for your respnnse....I mainly have bone pain, severe tiredness and severe balance issues. Any of this for you? You are way to young to be suffering......Can you join a gym?
lainey ruocco With how I have learned to live with MGUS and my comorbidities, I don't feel like I am suffering. Most days I feel pretty good, some days and even weeks are terrible, but I am also learning to cope with my new "normal". As long as I do not over exert my body I stay well. I walk and do yoga, I run around with my kids for exercise. I do have to be careful with how much I exert myself because of a genetic heart condition. I will be making another video soon updating and sharing what I learned my first year with MGUS. I also have another video on my channel sharing about my comorbidities. 😊
OK, will wait to see what you share, but, please include symptoms. thanks!
I don’t have it that’s why I was asking if I have MGUS or not
All I have is that free light chains are a little high
You can have light chains only MGUS and Myeloma. It is a rarer presentation but it is a thing! I don't know much about it. If I find something on it I will comment with a link on it.
john hana www.wikilite.com/light-chain-mgus
Hi I'm a young person with mgus.
Hi Kayla! 💕💕
@@BritneyNicoleandMyeloma I have been told I have this protein and a 99 percent of developing it starting in 2014. I don't know where to start with the blood test, multiple doctor appointments, the pain, oh and don't mention a the different lumps appearing in different areas of my body. I got kinda frustrated with the doctors because I wanted more answers. So I glad to hear there are other young people like me. I'm in my mid thirties.
On way to oncologist next week. 0.6 igG kappa, having symptoms. Only had spep and immunofixation test so far. Not sure what will be next. Have symproms of fatigue, horrible ongoing headaches and body aches everywhere.
James C I hope you get answers!! I also hope they figure a way to provide you with some relief!
Britney Nicole thanks and thanks for video, im hoping not to have the type 3 doctor
I was told I have MGUS but M protin is normal?
john hana you should have no m-protein. It is abnormal to have it.
Sour Skittles, thanks for your reply.
www.dovepress.com/polyclonal-free-light-chains-promising-new-biomarkers-in-inflammatory--peer-reviewed-fulltext-article-CBF
This is very interesting of understanding free light chains.
@@BritneyNicoleandMyeloma I think they might mean M spike.
Who are the doctor who say this as a cancer.....
MGUS is a condition is which abnormal cells are growing within the bone marrow. These cells do not behave or act like typical cells which experience apoptosis (cell death), these cells stay and even grow (divide) until they become detectable in a blood test.
By a very simple and layman definition alone, MGUS can be classified as a cancer...
However, most doctors are very careful not to call MGUS cancer because people can live a long time with the disease and some people experience very little change in their health because of it.
There are many people who also develop MGUS and then it goes away. The body's immune system does the job by identifying these rogue cells and destroys them.
The problem with people with MGUS that stays and progresses to other plasma cell dyscrasias is the immune system doesn't make that distinction.
Only a(n) Hematologist/Oncologist can diagnose this disease and properly assess what the cause may be and if you have markers that indicate a risk of progression to myeloma, amyloidosis, or other diseases.
Every MGUS/myeloma patient has their own unique markers, risks, and chromosomal makeup that lended to developing this health issue.
@@BritneyNicoleandMyeloma thanks for the information I'm quite confused since I had this ive host problems since I got it how about you thanks information helpful but is it a cancer or not?? If so who's says it is??? If you don't mind me asking ??? I hope you OK as you can be
I don't understand is it Cancer? If so do your doctor have you on methotrexate. 🙄
Amazing video....very informative 😳👍...I have exactly the same, MGUS IgG, with many neurological symptoms....saw 1.000.000 doctors, pfff
Like you say not everyone takes this seriously...very sad ! 😌
So frustrating! 😬
So can y'all receive disability.
Good question! I guess it depended on the individual and their limitations. Most people with MGUS have no symptoms, or they have limited symptoms.
I've been denied despite numerous of health issues the I have.
I'm sorry.well they have my cousin on methotrexate