Young Woman with MGUS (MONOCLONAL GAMMOPATHY)[CC]
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- Опубликовано: 31 мар 2017
- My name is Britney and in October 2016 I found out my body was making a monoclonal protein - type IgG lambda.
For more information on MGUS and Myeloma related diseases visit:
www.themmrf.org/multiple-myel...
www.myelomabeacon.com
To connect to me:
Instagram britneysmitley
Twitter britneysmitley
Facebook / britney.smitley
Check out some of my work:
Thought Catalog thoughtcatalog.com/britney-smi...
Mogul onmogul.com/britney-smitley
Britney, thanks so much for this video! There aren't a lot of videos about MGUS. My blood tests in February 2020 showed a monoclonal gammopathy IgA heavy chain. In July 2020 my additional blood tests show an IgA lambda monoclonal gammopathy. I'm seeing a hematologist/oncologist and he plans to do more tests. At this point, I don't have cancer but this whole MGUS thing is crazy. I mean one day I'm doing fine and then boom ...I get bad blood test 4 months later and I'm seeing an oncologist for precancer. If the worry alone doesn't make me crazy, the constant barrage of tests will along with the doctor and lab bills.
I hope you are doing okay and are getting treatment. I'm asymptomatic so I'm not getting any treatment now. Where this train is going...who knows...but I want to get off the MGUS train.
I'm in the older category and was diagnosed 4yrs ago. I am asymptomatic but have never heard of mgus before. All the support groups I've checked into deal with multiple myeloma, so I'm on my own. Drs tell me it's not cancer so dont worry. Finally went to a naturopath who said it's not preventable and not curable but let's keep your blood as healthy as possible! Best news ever! I take vitamins including turmeric and honestly I feel great. You need to take charge ...its your life and your responsibility
Thank you. You are awesome. Just learned that my husband has MGUS...learning the ins and outs, getting educated. You are an inspiration. Thank you.
Alda G Detrick thank you so much for watching and for the kind words! ❤❤
Hi Alda. Hows your husband going? 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 is your Husband at?
Joel.
@@BritneyNicoleandMyeloma hi ... I’m Kathy I’m 37 and I have MGUS don’t understand it well, but I would love to have a community for a support system. Do you have a Facebook group?
Kudos for the Video! Sorry for chiming in, I would appreciate your initial thoughts. Have you considered - Taparton Sturdy Nerves Takeover (should be on google have a look)? It is a smashing one off product for Getting rid of Neuropathy without the normal expense. Ive heard some extraordinary things about it and my BF got astronomical success with it.
Hello beautiful! I was diagnosed with MGUS almost 7 months ago and I was told either I'm fine and there are no symptoms and they are all in my head or I've been shuffled around from doctor to doctor because no one will see me anymore. The frustration is overwhelming and the pain has taken my quality if life. I live everyday with bone pain, headaches, pins and needles, vision loss in one eye, dilation of one eye, itchy skin, etc. I'm praying for you and hoping you have found answers after all these years. We are here to support you and hope that you have found answers to share with us.
Britney , I am David from NY retired from NYC fire Department, sept 2019 started having server asthma attacks had not had a minor asthma attack in 12 years after my retirement . Had worked at WTC . Had a chronic cough from my exposure to WTC dust. I got in contact with pulmonary MD to confirm I was having Asthma attacks so bad I needed rescue inhalers just to walk 100 yards. Doctor requested blood work found I had Mgus . Sent me to cancer doc . Had bone scan more blood work numbers kept going up breathing problems increased. I worked years as an EMT for the Department, Years I been a strict gluten free organic vegan . Into fitness yet my health situation was getting worse fast. Then I realized I just bought my home a condo in a community I had not previously lived in went from well water to town water. Learned my town uses chlorine and Florid to clean the towns water supply I put an expensive water filter under my sink . Three days later my asthmatic attacks stopped . My last blood work I was advised I technically do not have Mgus any longer. Now , if I go out to eat with friends I super sensitive to where I get Water from. I drink water from a area that uses those two chemicals I will have an asthma attack . My MD still wants more blood work every other month to confirm it was not a false reading but I am able to speed walk now for an hour non stop at 14 minute pace two months after installing a filter were couldn't walk 100 yards . A simple solution to a problem really my Doctors really were willing to play a waiting game.
I just found out from my Neorologist. I have the same exact systems. I’m so scared. I can’t even go to work. I have headaches, twitching and numbness. I’m 37 and I feel like doctors keep brushing off. They always tell me oh your too young. I just want to feel normal again.
I am so sorry you're dealing with this!
Although I am a woman in my mid 40’s now, Everything started at age 33 for me. I was diagnosed with RA and fibromyalgia. I still struggle today even though I have done a ton of things to try to heal. My rheumatologist is the one that found my IGG lambda monoclonal. Also, my Igm has always been high. My inflammation markers were very high for years. I went off all of my meds a couple years ago and they are almost normal now. He never told me that I had this for years. I never knew why he never wanted me on biological medicines. I was naive then and never asked until one day I was looking on my blood work and spotted it. I questioned him and even then got limited info. He sent me to an oncologist to be tested. They took xrays of my body and blood work and determined that I did not have myeloma. I have looked for info but there isn’t much on it. If you find anything more, please share it with me. Thank you.
good luck, may God bless you
Great video Britney thanks for putting it up. You describe the same thoughts that went through my mind on learning I had this recently. I heard it from a rheumatologist as well when getting seen for psoriatic arthritis.I learned that there are many different biological types for any mgus and it is more frequent in connective tissue diseases,which you also have, and the biology of this background may confer a lower risk of progression. I admire your courage to post this
Tony Miller thank you for your kind words!
Thanks for your videos, Britany!
Thanks for your video. 37 and just been diagnosed with MGUS. Reading the comments and your video proves there is young people with this! I have neuropathy also tingling feet. IGA so not the good one! But my risk profile is intermediate. I saw your email in above post, I might reach out soon. Thanks
Sorry to hear you have been diagnosed with MGUS it’s very isolating your right. I have bone pain in my back, hips, legs, along with tiredness, falling over, headaches it’s really awful but my GP said not to worry as I am too young to get myeloma. I am MGUS with IgG Lambda M protein 4.2 what ever that means with high G proteins … so frustrated like you that there is not a lot out there on this but I have found Dr Durie on RUclips really helpful and Myeloma UK charity. Hope your feeling good at this time?
6 months is amazing. We have been struggling for a diagnosis for over 2 years
Thank you for this video! I know this was a while back but I hope you are doing well. I’m 35 and am anxiously waiting for a diagnosis, I think it will be MGUS or possibly MBL (monoclonal B cell lymphocytosis) based on my own research and fact that what was found is very low level. But it’s been a scary roller coaster for sure. All the best to you!
Very informative video Thank you so much! God bless you 😇
Ill be 33 this month. I was diagnosed in June with mgus. I believe it is the cause of my neuropathy as well. So much pain. Prayers for you.
Thank you!! And to you too ❤❤
Hey girl, I know that this is a really old video but I’m so happy to have found you. I’m 39 and was recently diagnosed with MGUS as well. I am overwhelmed by symptoms as well. I have moderate to severe muscle weakness, tons of twitching from head to toe, I have had diaphragm spasms/ hiccups for 8 months now along shooting sharp pains and some other strange symptoms. I’m now using a wheelchair. I’ve had a bone marrow biopsy that confirmed Kappa light chain MGUS and have another biopsy scheduled for July 19th which will be a fat pad biopsy to rule out amyloidosis. I’ve had tons of testing as well. I really hope that you are doing well and hoping that you may see this. I would love to talk to you about this stuff because just like you, I know no one who can relate to me with all of this. It’s been quite a difficult journey thus far.
Hey! I have my socials linked to this. Feel free to reach me on either Instagram, personal or myeloma related, or my personal Facebook. Facebook.com/britneyrue
That way we can chat privately about things and not on thisboublic forum ❤❤
Also in my description box is links to my socials, hope to talk soon!
May i ask what was coming up in you're blood showing u had this? I have the same symptoms as you
I was diagnosed at 31 with light chain MGUS. I'm actually my doctors youngest patient. I also have neuropathy issues, aches pains and other health problems. It's a hard diagnosis to hear and i've struggled a lot with it. I'm still also learning and hoping to learn more about it.
Read my comment above
How are you doing?
watch out .iwillbeprayingfor your safety my youg lady
Thank you for this. I was just dx'ed with MGUS IgG lambda two weeks ago. I will send you a message via FB.
Just learned my Husband has MGUS and just wanting to find more information to read up on it. any suggestions would be great! Thank you
I don't even know where to start. I've had symptoms for years that got worse in 2019. I've been sick since then. I have or have had almost all the symptoms you mentioned.
I was blown off by one Rheumatologist and told I was stressed, but my labs didn't make sense. The second Rheumatologist told me she didn't know what was wrong with with me. She conformed hypermobile joints and my labs didnt make sense, but definitely not auto-immune related. She referred me to a third Rheumatologist who LISTENED to me. I am now being referred to a Hematologist because they suspect monoclonal IgG lambda band...I have protein in my blood......I turned 40 two days ago.
I'm sorry to hear you may have a monoclonal gammopathy. It is quite stressful at first, however once they pinpoint what's going on it means they can help alleviate symptoms with a team of people managing you.
I was just diagnosed with MGUS I am 30 years old , my doctor wants to do spinal fluid extraction even though most of my labs are completely normal , Besides the igA is in the 1000 . I would love to connect as I have seen that you have small children and of course being sick an unable to care for them is my biggest fears
I have mgus since my late thirties and now I am fifty. I went 3 times every six months. My doctor says I won't develop myeloma. One percent which is low.
Can you do an update on how you are doing please
Hi Britney was your grandfather a Marine stationed at Camp Lejeune?
I have MGUS and was at Camp Lejeune. I am 76 Years old and have minor symptoms. I treated myself with Quercetin that is derived from apples and other berries as well as vegetables. In other Countries Quercetin is known to both prevent MM and treat MM but The AMA and the drug companies with the FDA refused to recognize the international studies about Quercetin as a viable treatment for cancer and other diseases. And insists Doctors only treat patients with FDA approved drugs.
If you and and others have MGUS it is actually a secondary immunity deficiency disease. You got this from drinking water loaded with un Godly chemicals from waste products that was dumped into your water supply. As what happened at Camp Lejeune for 30 years between 1953 to 1984
I was told a year ago I have it and was told it's no big deal
Hi. Interesting video. I'm one of those 'older' people with a monoclonal gammopathy, Igm lambda. Living with it for about 2 years now. I didn't write MGUS because I have symptoms (which my GP frustratingly seems unwilling to recognise and now wants me to see a shrink!). My haematologist just says that I have diffuse adenopathy but the swollen lymph nodes are roughly 1cm in size only, acknowledges my constant fatigue, but still want to 'watch and wait'. I think he said it's an indolent lymphoproliferative disorder. Neither GP nor haematologist seem willing to acknowledge that constant fatigue is a problem.. as also the pain from the 'slightly swollen' lymph nodes, and offer no treatment. From what I read, my kind of MG can progresss to a lympoproliferative form of blood cancer or to Waldenstrom's macroglobulinemia (apprarently not much difference between the 2?). Ali Handel, nearer your age, has Waldenstrom's. We all belong to a fairly exclusive club, with varying outlooks, but the vast majority will die from another illness, to keep things in perspective! That said, we seem to be left floundering to discover about our own illness. I still don't have a firm diagnosis, but I know my stamina and general health are going downhill.. though things have stabilised somewhat since i started taking CURCUMIN. I would reccommend anyone with any kind of cancer or MGUS to research this. My first 18 months showed steady, exponential progression. 6 months on curcumin and the progression was minimal (only 0.2g/ litre increase compared to the 2 or 3g/l increase over the preceding 6 month period! Incidenally just had my PSA tested again and that was almost normal at 4.5 when previously it had almost reached 10 and my doc wanted to do a biopsy. (I took a course of crinum latifolium which seemed to help my prostate).
So just to summarise.. thanks for the video... you say much of what all of us feel... READ up and seek support, and also consider ALTERNATIVE medecine. The medical profession is aware of the benefits of curcumin, but the big pharmaceuticals aren't interested if they can't manufacture it, patent it and sell it for a big profit.
take care..
Rocky Koast thank you for your comment! Since this video I have started curcumin and CBD oil and my life has changed for the better!
What is PSA?
@@surenderjaiswal3809 prostate specific antigen test. www.cancer.gov/types/prostate/psa-fact-sheet
@@BritneyNicoleandMyeloma I'm glad you've found a combination that works for you. :)
I have MGUS. diagnosed at 35 years old in a blood test for something completely unrelated. I too have peripheral neuropathy, in my foot. Shit myself when I was diagnosed, felt like I had a time bomb inside me waiting to go off. my initial hematologist/oncologist didn't exactly fill me with a great amount of positivity. but have educated myself a bit since and I'm more comfortable with the doctors I see now. I've learned to live with it over the past few years. still get nervous when I go for my 6 monthly tests but what can you do! I just get on with life.. in 6 month chunks! :)
Hey, how are you doing girl? I just found out i have it as well.
@@oldladyintheshoe2776 I just found out I have it too.
30 years old just diagnosed MGUS IgG Kappa type in serum and kappa light chains in urine. They found it while doing full workup for autoimmune disorder which they also still suspect. ☹
So sorry to hear that! They don't know much for us youngsters but it's looking like our progression risks are pretty low yearly. Good news is if you do have an autoimmune disorder your risk of progression to a more serious disorder is even lower!
Thank you for this video, Britney! You explain this so easily and have great info. I don't know if you can answer this or not but do you know why ppl with MGUS shouldn't take pain relievers like Ibuprofen?
Billy Murray I'm no doctor but I know kidney function can be impaired with a Monoclonal Gammopathy, so that could be a precautionary thing a doctor may tell a patient. 😊
Thankyou Britney..my wife just been referred to a hematologist on suspicion of myeloma..she has high igg and high alkaline phosphate but everything else is fine. She has no symptoms apart a pain in her ribs..her kidneys calcium levels and bence jones results all good but I'm worried sick about it and kinda hoping it's mgus rather than myeloma
Am I wrong to hope its mgus at worse not belittling mgus but blood cancer seems so scary..
I have just been diagnosed with MGUS. Though not multiple myloma I'm still worried. The plan for me is blood test every 3 months for a year then twice a year. The haematologist keeps telling me it's nothing to worry about.
Amiee Di I am sorry to hear you've been diagnosed with MGUS. If it is low risk MGUS there really isn't a lot to worry about...
However, MGUS isn't "symptomless" as it used to be described. At worst you will deal with some neuropathy and autoimmune systems, because in a way MGUS acts a bit like an autoimmune disorder. But it isn't life threatening and MOST with MGUS do not progress to other, more serious diseases.
If you have high risk MGUS, you will be watched more, however progression risks are still pretty small... After so many years of being stable they may even drop to yearly checks.
Diseases that we are watched for progression with are: Multiple Myeloma, Poems Syndrome, schnitlzer's syndrome, and Amyloidosis. If you are IgM you are watched more because it can be tied into different lymphomas.
In the beginning it is very scary and overwhelming, however the Myeloma/MGUS/amyloidosis/POEMS communities are amazing and love to share their wealth of knowledge. I have listed some sites in my description that you can visit for more information!!
Sending positive thoughts/prayers/vibes your way!! ✨
Ask/vent/chat about anything, anytime! Our community, truly, is the best!
Just diagnosed with MGUS last week and I’m in my early 40s. It’s IgM lambda with a low FLC ratio which my oncologist says puts me at a higher risk for development into Waldenstroms/lymphoma. He felt it was significant enough for me to undergo a bone marrow biopsy. The result was negative for a plasma cell disorder but we will be keeping an eye on it every 6-12 months for the rest of my life. Would be interesting to speak with you further about what you’ve learned. I am also symptomatic with peripheral neuropathy and fatigue.
Saw the heart, ty. Quick update. Shortly after i posted this i had to have an emergency surgery and was diagnosed with Non-Hodgkin Lymphoma Stage IV. Currently in treatment with chemo/immunotherapy.
@@jillybeann so sorry , I can't imagine how you must be feeling, but remember there are people praying for you.
Just letting you know you are still in my thoughts
@@gw4451 Thank you!
Sorry to hear your diagnosis, I am very similar to you Jilly MGUS, M spike, below reference neutrophils, but they say not to worry as I am young do my GP said I am not urgent to be referred 😕 how are you getting on with your diagnosis now?
Hello I’m 22 and I am currently being rated to be diagnosed with MGUS . I do have a monoclonal protein in my urine but I don’t believe in my blood . Any advice for being younger with this diagnosis . I have peripheral neuropathy and extreme migraines
There is a possibility that your MGUS is a beginning of a disease or a symptom of an existing disease, like a connective tissue disorder.
My advice is that you do your research and advocate for the best care. Also, seek out a second opinion...
Lastly, take care of yourself! MGUS doesn't always progress...
The best thing we can do is manage inflammation in our bodies through diet and supplements. When you are having low symptom days make sure to exercise, even if it is a short walk.
Wishing you the best! 💕
Just diagnosed with this at the age of 19, not really sure what to do but this was really helpful and really relatable.
Brenmaster24 sorry to hear that you have had to get a DX like this! Thankfully, we know now that MANY things can trigger an m-spike and it doesn't necessarily mean it will progress to a malignant condition. I have met others who have m-spikes from things like Lupus or a virus.
Wishing you the best!
Britney Nicole I have it and I assume like everything else it’s been caused by my Rheumatoid arthritis. It’s making enough mess of my health all by itself d
I've been diagnosed with Fibromyalgia about 10+ years ago. Always in pain. Now this M-Spike is 6.2 and they are worried. I am now 39.
pitchblacknight I am sorry to hear that you are going through this! I hope your labs and scans come back with no signs of active disease. Keep in touch! 😊
I've started having this really odd abdominal pain that won't go away. My fibromyalgia systems always made me think it was just that. So I ignored a lot of warning signs just writing them off. I'm worried about the M-Spike and my Creatine was Triple over what it should be and I'm worried I just took pain killers to cover up the pain when it might have been this the whole time :/
pitchblacknight until you have all the tests I wouldn't worry just yet! I have met people with high M-spikes and their labs were all a mess and it resolved on its own... If you have a virus or a reactive immune system it can cause m-spikes and MGUS. If your bones are fine it is definitely not full blown myeloma, and with the small chance it may, treatment options are very good. I know it can be very stressful... There are also several other conditions that can cause m-spikes.
I will keep you in my thoughts/prayers/etc. ❤
@@pitchblacknight what happened? I have a fibro too and labs showed a spike in M Protein and will see the oncologist next Tuesday. I have been having extreme back pain, my hips hurt and I’ve been extremely tired and get awful cold spells. This all started after I had “C”.
I was just just told I have MGUS. IGM type. 44 years old. Symptoms were numbness and tingling , weakness for a year on and off. How are you doing today?
I have been doing really well! I have good and bad moments but more good than bad lately. 🥰
I am 24, I found out I had the same paraprotein in my blood when I was diagnosed with arthritis. I am still waiting to see the haematologist. I guess it will be an MGUS.
Sorry to hear that! I haven't made any new videos in a while but we know a lot more about m-protiens and what may bring them on. Most of us young patients are uncharted territory and the good news is your risk if progression is low in the beginning and is even lower if your m-protein is autoimmune related. If you ever need to talk or want more info on the subject feel free to email me at britneysmitley@outlook.com. ❤
Not sure how to contact you. I will share info and experience but not in public. I am on facebook Anthony Giza if that helps...
thanks for watching! feel free to message me on facebook @ facebook.com/britneyrue or my email, britneysmitley@outlook.com
Hi Britney, do you have foamy urine as a symptom?
Foamy urine can be a symptom of MGUS or other conditions related to MGUS.
Hi my name is Joy how are you doing and feeling today I am Watching you now I have MGUS and I am HIV positive with love Joy
Hi Joy! I am doing well. I hope you are too! ❤
Hi Britney may I ask how mgus effect you ,,,, pain illness etc,,, I’d be interesting to know,,, I have mgus myself,,,, you know quite a lot ,,, did you have the bone marrow extraction?,,,, it’s nice to meet other with it,,,,,, were in the world you from? If I may ask?,,, symptoms what did you have?,,, I’d be course these with mgus ,,,, and the boards,,,, yoi said some doctors agree with you,,,,, Iam igm ,,,, igg,,, kappa light chains,,, etc,,,, great to meet you
I didn't have a bone marrow extraction. My oncologist determined with my Igg type gammopathy that it wasn't worth the pain to do it, not until my numbers are worse. I have had a lot of symptoms: pain, fatigue, nerve pain, autonomic dysfunction (I think this could be from EDS, too. But I think my free light chains are causing majority of my neurological pain), and I have some issues that look like I could be dealing with poems syndrome and will be getting some biopsies done this month.
I currently live in the US, I was born in Germany, and have traveled quite a bit.
@@BritneyNicoleandMyeloma might be good to have bone marrow test you say eds how do you get that tested???? I think I'm iggk. Clone s high amyalodos that's worrying for me.... Since mgus I've gone from good bones to bad bones in 26 months :( :( :( we alike in many ways.... Your videos are extremely important.... :) thankyou
@@BritneyNicoleandMyeloma most what you say I have as well...
@@BritneyNicoleandMyeloma ⁹
@@leelabrock4266 how are you doing?? Its,been a long time how things with you !!
I have just been diagnosed with mgus also I'm 48 years old and quite worried thankyou for you post
Hi I just like to tell you that I’ve been taking curcumin for the past two months and just got my lab results my kappa went down from 26 to 24 and my ratio is normal now.
john hana that is so encouraging to hear! I hope you continue to see better Health! 💕
Same idea must take to reduce chance of possible cancer. I tried turmeric with black pepper. Black pepper help tumeric to be absorb in body.😃😏👍
what is CBD oil?
Rocky Koast cannabidiol. It is derived from cannabis. It is legal in most US States now. Most tinctures have no to minimal THC so it doesn't have a narcotic effect.
How r you dong
I am doing okay! I have a check up soon. I have a connective tissue disease along with the monoclonal gammopathy so I think that is why this journey is up and down for me. But I have good stretches and bad stretches.
@@BritneyNicoleandMyeloma I have now had mgus for a year now on 6 month checks for a year it's a strange think to have and I try not to think about it but at times I do .how long have u had this for now ?
@@BritneyNicoleandMyeloma ps I have the igg Lambada which I believe that is what you have
@@kevindickerson714 it has been going on 5 years now. And yes, I have IgG lambda as well! 😅
@@BritneyNicoleandMyeloma does yr paraproteins go up and down mine started at 8 now is 8.7 bit worried about rise but doctor is not