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MGUS: Living With a Time Bomb

Updated on May 1, 2017
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Holle is a retired English and creative writing teacher. At the age of 49, she was diagnosed with MGUS.

My Diagnosis Came From a Routine Blood Test

I have MGUS—monoclonal gammopathy of unknown significance. Never heard of it? Neither had I until it was discovered on a routine blood test. When I got the lab reports from my doctor’s office to forward to Social Security for an entirely different condition, the numbers were highlighted in yellow, and there was a note at the bottom of the page that read, “Refer to oncologist/hematologist.”

Of course, I was alarmed. I called the doctor and the staff refused to tell me anything, I couldn’t get in to see the physician for over a week. I did what most people do—I got online and researched, learning everything I could about MGUS.

I found out that white blood cells called plasma cells make proteins called immunoglobulins that function as antibodies. They fight invading bacteria and viruses. When one of these proteins gets “out of whack” and starts cloning itself, it’s called monoclonal gammopathy. Raised levels of these proteins are seen in patients with multiple myeloma and lymphoma. The particular protein they found in my blood is related to multiple myeloma.

In July of 2000, my aunt was diagnosed with multiple myeloma. We had always been extremely close; in fact, she was like my second mother. She lived just down the street from us, and when I was a kid, I stayed with her while my mom worked.

My Aunt Tinkie went to Atlanta to receive her cancer treatment. Her daughter lived there and was a health care professional, so my aunt was able to see the best myeloma doctors right away. Even so, she lasted less than a year. With this in mind, you can probably understand why I was pretty much “freaking out.”

Finally, I Saw the Doctor

I was able to see the oncologist-hematologist about ten days after I learned about my MGUS. He was very patient and informative. He said that 1% of the population over the age of 50 has the condition. At the time, I was 49. I also learned that my MGUS might never develop into multiple myeloma. I have about a 2% chance a year of the MGUS progressing into cancer. So if I live until I’m 76, I’ll have a 50-50 chance—I’m 51 now. I guess the frustrating part is that nothing can be done about the MGUS until or unless it develops into multiple myeloma. They’re just “watching it.”

Blood Tests Every Six Months

I try hard not to even think about the MGUS, and I do a pretty good job of that except for when it’s time for the tests. Then I’m a basket case. My blood pressure is usually about 130 over 70, but when I go in to see the oncologist for my test results, it always shoots up. It has been as high as 180/110. I told the nurse I didn’t have to worry about multiple myeloma—I’d die from a stroke first. Amazingly, as soon as I’ve received good reports, my numbers return to normal. Just goes to show you how detrimental stress can be!

I have to have blood tests every six months, and a 24-hour urine test once a year. Sometimes I feel as if I have a ticking time bomb inside that’s just waiting to explode.

I just returned home from my six-month blood study, and the MGUS level was up. If it continues to rise, my doctor will perform a bone marrow biopsy. I’ve already had my cry, and now I feel somewhat better. All I can do is pray. I’m not going to let this dominate my life.

Some experts say that MGUS can be caused by lupus, inflammation, or even from severe arthritis. Other experts disagree, however. I choose to believe the first group. I have severe arthritis, so maybe that’s why I have the MGUS. Either way, there’s nothing I can do about it, so worrying will only make me feel worse.

Words of Advice

If you’ve been diagnosed with MGUS, try not to let it rule your life. I realize that’s easier to say than do. Even if the worst happens, and your MGUS develops into multiple myeloma, MM isn’t the quick death sentence it was just a few years ago. With new treatments and technologies, multiple myeloma victims are living longer and better quality lives. My doctor has several MM patients who have been diagnosed for six years, and my daughter, a nurse, sees a patient who’s had myeloma for ten years.

If you have MGUS, I know the range of emotions you’re going through or have gone through. You’re not alone. I suggest visiting these two very helpful websites:

You’ll find all kinds of information there about the latest treatment for the disease, along with a support group and other invaluable resources.

Updates

On my last visit to the hematologist/oncologist, my MGUS numbers had shot up. My physician was going to schedule a bone marrow biopsy but decided to do some more intense blood tests before ordering the procedure. Since those blood tests were good, I didn't have to have the bone marrow biopsy.

I did, however, have to have a complete skeletal survey. This was just a series of X-rays to look at my bones for any lesions or "holes." Fortunately, none were found. Since my MGUS numbers have been rising, I now have to see my specialist every three months instead of every six months. I really hate having MGUS.

The Very Latest

I had a bone marrow biopsy/marrow aspiration in April, 2011. They found 5-10% plasma cells. My oncologist said the number would have to be 10% for a diagnosis of MM. I was pretty upset, but he said my plasma cell numbers might never increase. Keep the prayers and good thoughts coming! I sincerely appreciate all of your comments!

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      Boston_PWL 5 weeks ago

      Having MGUS is the best thing that can happen to you. Its a blessing we're all even getting tested for it in the first place. Outside of knowing about MGUS, the only thing to look forward to would be showing up at your GP complaining of back pain and finding out you have Stage 3 MM.

      I think its Iceland or another country that just made the blood test mandatory. Its that important. Also there is brand new study just launched at Dana Farber where they are screening "high risk" MGUS for early treatment with the same cocktail they use to blast out full bore Myeloma.

      In 10 years MM will be looked at more like a chronic disease and nothing more. The labs have already isolated synthetic versions of bones so the testing for this disease is exploding. Also consider that MM is the best cancer out there in terms of affecting other parts of the body that it does not spread outside the bone (it can't).

      I have also heard that keeping up high hydration and improving your "gut" is critical. Get lots of probiotics, lots of fermentation (Kimchee) , Turmeric, Curricium and Vitamin D. Also if you have one close by, treat yourself to cold pressed juice with beets in it anytime you get the chance.

      I read a while back about 2 cases where the above PLUS a full Gluten free diet cured MGUS. But in that case the person's M-spike was so low to begin with its unclear if they had MGUS to begin with.

      Best of luck to everyone! Join the Facebook group as well.

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      Jillyhh 2 months ago

      Hi

      This is a long way down the line. How are you ??

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      Tony Coe 2 months ago

      Hi

      I have just seen this site and want to thank you all, as I have found it to be very informative and interesting to find out about other peoples journey with this condition

      I was diagnosed with MGUS after a routine blood test 3yrs ago ago aged 57

      Thankfully to date it has not changed but I am suffering huge amounts of fatigue, I thought this might be due to having a low thyroid, but after reading others articles I suspect the MGUS may have something to do with it def something I will bring up with the Dr's at my next appt next month

      I noticed a couple of people talking about life assurance and saying as MGUS is not a cancer they should be able to get cancer cover (critical illness cover)

      I am a Financial Adviser and I can tell you the life companies will refuse to cover you for both Life only and/or Critical illness cover

      Also in answer to the question someone raised,you do have to disclose the MGUS to the life companies or else this would be considered as a non-disclosure and the life companies would/could refuse any death claim and/or critical illness claim, if the MGUS turns into any form of cancer in the future

      Please also note if you already have Critical Illness cover, you can not claim under the policy for MGUS, but please, please keep the plan in force as you would be able to claim if the MGUS does turn into MM in the future

      Hope some of you find this useful, but all of you keep your chins up and I wish you well

      Tony

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      susan phillips 3 months ago

      IN fact I also don't want to add my full name or any of the comments - just wanted to communicate with you. Sorry - please don't post, not thinking straight tonight

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      susan phillips 3 months ago

      Sorry I accidentally posted last without editing and meant to say thanks for sharing your article. It helps to know you are not alone. Also, please could you delete the reference to where I live from the last post as I meant to take that out! Thanks.

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      susan phillips 3 months ago

      Hi everyone. I'm having a tough time tonight and don't have anyone to share it with. I thought I had been through it all with Conn's syndrome and taking spironolactone for years. When I finally got treatment and had an adrenalectomy I thought I could put that behind me. But no, in the meantime I had developed fibromyalgia or so the Drs diagnosed. Last year I was diagnosed with the blood disorder MGUS, had a blood test two weeks ago as I have been feeling very unwell (tired, back pain, dizzy, tingling/electric shock feeling etc). Anyway, I have a hospital appointment on Wednesday. This seemed a safe place to share because I have a daughter/dependants etc and I don't like to scare them with how I feel. Anyway, I am Liverpool based and keep wondering why I have had so many unrelated things wrong with me. Just a bit sad and scared. Thanks for reading if you made it this far! x

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      Sylvia L. 3 months ago

      Just want to add one more piece of info from my doctor which no one mentioned below and I find very interesting.

      Apparently, there are now quite a few cases of MGUS but it does not necessarily turn into MM. Many can live with this condition on a stable level.

      However, there has never been a case of MM without first having had MGUS.

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      Sylvia L. 3 months ago

      Maureen - read your report.

      1) Re the bone marrow biopsy - it's the only way to detect early if you have MM. In other words, if the bad protein showing up in your blood is in fact cancerous.

      2) Re night sweats - don't know about any connection to MM or MGUS but I did have severe night sweats when I had, unbeknown to me, a blood infection. I was totally soaked, had to change my nightwear and sheets etc. during the night. It is something serious to that degree. Better have it checked out right away.

      Good luck!

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      Sylvia L. 3 months ago

      Thank you Holle for your information. I hope you continue to hold your own.

      My Dad passed away in 1995 from MM whereupon I met with his doctor and was told that MM is possibly hereditary and that I need to do a special blood test yearly called electroforesis.

      My blood test became inconclusive in 2016 and by 2017 it showed .04% of the bad protein. I am now at the six months blood test stage. Bone xray and 24 hrs. urine test did not show concerning results sofar.

      My father, once diagnosed, decided not to do any kind of treatment when he was told life expectancy to be not more than 10 years. My oncologist is telling me that once diagnosed with MM he has not seen anyone survive more than 2 1/1 yrs. I am thinking my Dad's doctor took the MGUS time period into account when quoting the 10 year survival possibility.

      My father was very courageous I feel. He had 9 years of quality of life. He bought himself a sailboat and took it to the Isle of Majorca where he sailed and played chess with the local top chess player. He only went back home in the winter for a few months.

      The last year of his life he became very tired. He never complaint of pains. The last time I saw him, he could barely walk due to his weakness.

      If my MGUS turns into MM there will be big decisions I'll have to make. Sounds like all of the treatments have not shown to extend life with MM according to my doctor. I will have to decide between quality of life or treatments I guess.

      I am now almost 70 years old. At this stage in life, it is hard to make plans for the future because I don't know how long I will live. I suppose, being diagnosed with MM at least I will have an idea how quickly I will have to move, getting things in order.

      I wish you all the best in your future. Stay strong!

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      Anna eisenhauer 3 months ago

      Are you IGA.

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      Angie 4 months ago

      Hi thanks for the info and just to know there are others out there also suffering the dreaded time bomb I was told I had mgus after having tests for autoimmune disorders I was only 34 at the time and was told this very rare in my age group I pRay that your para protein stays stable love and light Angie

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      Susan 5 months ago

      Your story sounds very much like mine, except I am just starting out. It has been just 6 months since I heard they were going to schedule me with an oncologist/hemotologist. I've seen my most recent blood test results, but am not sure which is the MGUS number. I hope your MGUS never develops further.

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      Ramzani 5 months ago

      In 2010 I was diagnose with MGUS after bone marrow biopsy was follow ups up for was once a month for 6 month then it was follow ups every three months and six monts then it was every year which was stable, and last year my my CD138 was positive after bone marrow biopsy for the second time and was really worried and was very emotional. Now I am refered to the myeloma clinic after one visit I developed Penumonia was hospitalized and was on intravinus antibiotics for 5 days after oral medication I was sent home. Resteded for nearly six weeks and did a blood test now I have developed a autoimmune condition + smoldering multiple myeloma I am really worried whats going to be next. I am refered to a Rhumotologist No treatment yet seeing the heamatologist in 4 weeks. I have faith in the Lord our God praying for a recovery.

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      NEUSA APPLER 10 months ago

      My husband had MM for 6 years, died of heart Dec,2014. I was devastated, we were widows and were married for a little over 11 years. Now 5 months ago, in a check up in Brazil with my gyno they found I have MGUS, I live alone in Key West, no family in the USA, but will never go away because I had the best years of my life here. The Oncologist here will make a follow up blood & bones next Feb. any idea about diet, life style, etc. will be welcome I don't know if it is allowed but here goes an email, n_appler@yahoo.com. Wish you good luck. I am really stressed and sad, but going on with my painting.

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      Maria 11 months ago

      Hi there. I was diagnosed with MGUS 4 years ago. January 2016 my MGUS level was 7 and I decided to start a vegan diet. April 2016 my MGUS level went down to 5.7 and this month, November, it was 5.3. My consultant is astonished. He said that in all his 30 years as consultant he has never seen anything like it. I will never go back to dairy and meat. My health has improved, I have energy, and I feel 90% considering I have Sjogren's Syndrome. Try it. It's not easy to begin with, but it will change your life.

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      Rita 11 months ago

      I was diagnosed with IgG Kappa MGUS in 2009. My older brother was diagnosed with smoldering multiple myeloma about the same time. His myeloma is still smoldering and I still have MGUS. My numbers have gradually increased over the years and I will be having my second bone marrow biopsy in the next month or so. I also was very stressed about the diagnosis when received and periodically become distressed. After doing research and reviewing my lab reports, I usually calm down. I have been to several hematologist/oncologist and they have all said I have nothing to worry about. I will probably never get multiple myeloma. For some reason that is not very reassuring. I am now seeing a physician's assistance and she is pretty much watching me closely to make sure she does not miss anything. Now that is reassuring. When doctors act like what you have is nothing, it is concerning because they are not expecting you to advance to multiple myeloma and they are not watching very closely. I have been going in every six months since 2009 and have changed doctors 5 times because of their attitudes. My grandmother died from leukemia so I am acutely aware of the affects of a blood cancer. No one can predict what is in your future. MGUS is not cancer and should not affect getting cancer insurance. I'm not too worried about my upcoming bone marrow test. I have had it before and if they give you something to take the edge off, it is not painful. I am not too worried about the results. I have been waiting to get multiple myeloma for 7 years now. I think if I am ever diagnosed with it, I will be ready. That is all you can do. Do your research yourself. There is so much the doctors will never tell you. You have to be pro-active in you healthcare.

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      Sherry 11 months ago

      I was just diagnosed IgA MGUS two weeks ago and I feel totally lost, I don't understand any of this at all. I'm to have blood work every 6 months unless it increases. There's no bones lesions. He also told me about the 1% of people over 50 has this and for me not to worry about it. Ha ha! I don't understand my numbers at all or what to even look at or for. Help!

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      Marc 11 months ago

      During the past 6 months i have been seen by perhaps 8-10 specialists, from neurology to nephrology, oncology to hematology.

      Seems my white blood cells were producing strands of proteins, that were effectively attacking my own body.

      In researching my medical records (military) it seems I have had MGUS for at least 8-9 years. I the past few years, I have lost over 100 pounds, lost the ability to control my bladder in any real way, developed severe peripheral neuropathy and now unable to walk, hold myself upright, dress my self, bathe myself.

      My oncologist and my neurologist are now running 24 hour urines and blood tests every month, looking for MM (Multiple Myeloma).

      I suspect its far past time for San Antonio to have a support group for MGUS patients/MM patients. Between SAMMC and UNiversity hospital, I now know what is happening, however feeling all alone makes it all the worse. Being able to meet and know people who have the disease, and who live with it sure beats reading clinical studies about probable outcomes.

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      Bryn 12 months ago

      Hi, thanks for such an informative thread, people's positive attitudes really are of benefit to others. I was diagnosed with MGus about 4 months ago but when the haemotologist looked back at past blood test results she saw that I had it at least 3 years ago. I know it may never happen but I am 37 and I was told approximately the percentage chance of it developing further rises each year roughly the same as your plasma levels (2.3% for me). Does this mean around 20years from now the odds are against me? Also does anyone know how it affects life insurance as technically there's no cancer yet, does MGus need to be declared?

      Thanks all and best wishes

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      Canuck1955 14 months ago

      I have sarcoidosis, and ongoing anemia and renal dysfunction caused my family doctor to blood work,

      which led to a MGUS diagnosis three years ago. I had 5% plasma cells,and was told to follow- up every 6 months with my doctor, by a hematologist. When the numbers started trending up some, and freaked me out, I asked to be referred to a MM specialist at a cancer centre. Going there also freaked me out! I had a BMB, but no x rays and tons of blood tests. I was stable until January of this year, when my light chain ratio and Kappa light chains jumped right up to a possible SMM level. I had another BMB, and the plasma cells remained at 5% ( thankfully), making me 'still" Mgus, and off I went to lead my life. Six months later, the M protein went from 0.1 to 0.2, and the light chain ratio went to 8.62. The MM specialist decided to repeat the test 6 weeks later. If the ratio went up further, another BMB, but they went down just a little to 7.42. Now, I am having a renal biopsy this Friday to see if there are any Myeloma cells there,and I see my specialist again in early September. My guess is that I will now be monitored more carefully and more often, depending on the biopsy results etc. I pray I am still MGUS. The best thing is to get assessed by a MM specialist, not just a local hem/onc, who deal with many cancers. The next, is to join a good support network such as MGUS EXCHANGE on Facebook. Wonderful folk there with lots of sound advice. Finally, keep busy, keep active, treasure every day and plan to reach old age. I am 61, and my goal is to live long enough to see my kids into middle age and grey hair!! Best to you all to stay MGUS always. If we should progress, know that there are many new treatments available these days for Myeloma, and many are living ten years and more with what becomes a chronic disease. it certainly does not mean your life is over, and, hopefully, they are moving closer to a cure .

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      Patty W 14 months ago

      I was originally told I had MM which freaked me out! The doctor had done a bone marrow biopsy on me and said I had mutant genes. She said in order to find out at what stage my myeloma was, I needed an MRI. I asked her to give me the best and worst case scenario. She said WITH chemo, 6 months to 5 years! If my husband hadn't been there, I would have thought I heRd wrong. She said depending on how many bone lesions I have would be the determining factor as to whether I was stage 1, 2 , or 3. She said my X-ray didn't show lesions so I wasn't a stage 3. She also said due to my mutant genes, I didn't have MGUS. So that left me with stages 1 or 2. But since MM isn't curable, I decided I wouldn't do chemo. So then I'm presuming I have a year or two to live. Finally I got my MRI results. No lesions show there either. Now my doctor says I DO have MGUS and no therapy is needed! I went through more than 2 weeks thinking I was going to die soon! Now she says people often live with MGUS and it never becomes MM!

      The only good thing that came from all of this is I realized my soul and spirit are ready to die. The terror of what would happen before I would die is what makes me upset!

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      Ellen K. 15 months ago

      I was diagnosed with MGUS around 6 months ago. Like most of the other contributors, I too discovered that I had this condition as an incidental finding during a routine blood test.

      In fact, I almost went into shock when my doctor booked me aa appointment with a hematologist and I walked into the Cancer Clinic--I never had a clue that oncology and hematology were virtually synonymous. I immediately called my husband and made him leave work and come to the hospital. My son dod end up coming to my next appointment but I think this is too close to home for even a future doctor to deal with.

      The hematologist did a complete blood test, a skeletal scan an MRI and a 24 hour urine test immediately--no lesions, and that ominous 1% a year chance of it becoming Myeloma. I am still unclear as to to whether that refers to 1% chance every year for the rest of my life or !% accumulated per annum overtime??

      I am a 54 year old woman who runs a business, and I consider myself to be intelligent and fairly competent in getting almost anything the first time someone explains it to me. This hematologist that I met with was such a poor communicator and spent all of 5 minutes explaining this condition to me. And although my son is in medical school and my family doctor is a close family friend, I understand very little about this condition and if or when it may lead to something more serious.

      My husband is adamant that I stop eating all meat and dairy--which he personally avoids, and I don;t disagree with him--at least that gives me something to do when there is nothing to do!

      In the meantime, I am looking for another doctor who I can relate to in a more effective way and trying to keep positive in spite of what has felt like a time bomb to me from the first moment I heard about it.

      Also, why has Habee left this chat?

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      Linda Fletcher 15 months ago

      I too have MGUS, for over a yr now,I was freaked out too but learn that it could be worse. I take Turmeric, green tea , and curimium all this is auppose to help keep you in MGUS state and not advance so far so good my test havent been as bad as first blood wise I mean.I do have Bence Jones of my kidneys but nothing can be done for that but watch also.

      I am 67 hoping to at least live imtil 77 or longer, God willing.I too freak out until I get my blood test back next one i OCT. I did get a bone marrow bioposy no cancer, MRI shows one benign leision which goes along with this. Bone Marrow sedation if you get one, I was just feeling high but was awake only felt preasure not too much pain, so ask for a setative, valium ambien is what they usually give calms you.

      i

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      Hiya 15 months ago

      Thank you for writing this article. I am 43 and found out through a random blood test that I have an m protein and apparently mgus. I am tested every six months and told not to worry. That's about it. I was scared to death to have to walk into a cancer center for the first time. At each apt I still get scared and think about death. In between I breath a sigh of relief and try to forget until the next apt. I will say I'm frustrated that I can't find info about food or over the counter meds to avoid and foods that might help. Maybe there aren't any? You'd think by now there would be some info. I was afraid to eat red meat now I'm afraid to take aspirin. Please let me know if you've heard of any dos or dont's. Thanks again for sharing, good read. Not something you can talk to many people about if you are concerned about worrying them.

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      Colm 17 months ago

      A routine blood test (showing MGUS) meant an immediate bone marrow aspiration/biopsy & CT scan. Am waiting for the results. I assume they suspect something bad because the biopsy was requested so soon. We'll see. The point I want to make is how sad some of these stories are; where partners/husbands don't seem to care about it! Thankfully I'm in the opposite position where I'm trying to play down the potential hazards because my family are so concerned. Darlene, my suggestion would to leave him...and start looking after yourself.

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      Darlene 2 years ago

      I was diagnosed about 3 months ago with MGUS. I have broken 6 ribs without any trauma. I have soooo much bine pain that sometimes I can't take it. I have to work and I don't know how much longer I will be able to. The burning in my toes, fatigue, feeling faint,weakness and pain has me not wanting to do anything. Is there anything that would make this easer for me to live with? I have developed heal pain over the past week. Another problem that I have is that my husband of 30 years has had back and neck surgery and has a few other problems. I have taken care of him for years. Everytime I try to take about what's going on he says things like, how do you think I feel, or I hurt too. He never says anything like can I do anything for you or I am so sorry you are hurting. I still am expected to be the rock and I try but sometimes I just can't. He still expects me to do everything that needs to be done and sometimes I am just to weak. Then he gets mad if I do cook. I need a treatment! Anyone have any suggestions? I Can't stop working. Thank you all this has really helped me.

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      lynne 2 years ago

      Hi have just found this site as i have just been diagnosed with mgus after 14 bouts of shingles in my eye, ear , face, head and shoulder. These bouts are now monthly and i have now lost my job due to ill health. Have had the tests and mgus confirmed but not one doctor or specialist say mgus has any symptoms, and that the extreme tiredness and pain are the result of me having permanent shingles virus in my system. After reading others letters i realise other people have symptoms as well and its nice to know im not the only one. What i find hard is my gp s attitude to mgus i was told to do some stretching exercices for the relly bad pain in my hip and back, and i should look for another job, it would do me good!! I am 62, and have worked all my life am i wrong to feel lt down by this attitude.

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      shaun larkins 2 years ago

      does anyone have skin numbness? feel my joints hurt going to do mri 25th, don't know what to think

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      patricei 3 years ago

      Hi a ll,

      I just found this today. My MGUS was diagnosed 8 years ago and like most everyone it was discovered when other routine blood work was done to monitor pre-diabetes and cholestoral. I was 48 and am 56 now. Thought I was kind of young until I read posts on this site. At that time, I was referred to a Hematologist and I had all the tests done..blood work, 24 hr urine, bone marrow biopsy, bone scans. All was clear except that I had MGUS and was anemic. I was followed by the Hematologist for about 18 months at which time I was told to have tests run as part of my annual physical with the GP. I cried and cried about it for weeks, only initially telling my husband. Later I told my siblings even though I was told that there was not a hereditary component in my case. I just wanted my 5 siblings to be aware. I did not tell my kids (now 24,25,29)cuz it would only worry them about something that can't be changed or treated until it goes to MM. After a while, I had to learn to live with it and to get on with my life. I had considered looking for trials to participate in. But, I was not ready to do that until now. Things for me have been fairly stable, except that 2 yrs ago, the protein showed up in the urine and my pre-diabetes moved to diabetes. Based on my blood work, the GP said that my MGUS has remained stable in spite of the protein suddenly showing up in the urine. GP thought the proteinurea was due to diabetes and not MGUS. Recently I questioned GP opinion and so, I am now back to the hematologist/oncologist trying to monitor the proteinurea and what it means for my MGUS.

      I was wondering if anyone else has had good blood number and then have proteinurea. What does it mean?

      Hang in there

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      Dennis z 3 years ago

      Hi all, I learned of my mgus one week prior to Christmas 2012 then had to wait 2 weeks for my hemo appointment and discussion. My last appointment in September 2013, has shown the level has risen from 8 to 9 and I'm coming up on the nxt visit. I will be 47 in April. I'm glad there is a site such as this. Keep positive. This week I visited my nephew of 16 years old in the Stollery children's hospital in Edmonton Alberta. He was diagnosed with Osteosarcoma (Terry Fox's cancer). What a great spirit and attitude. What could I have to complain about after visiting him? Like many of you, I have not disclosed this to family other than my awesome wife. But for two reasons. One, why worry them for today & 2: my hematologist (now I'm seeing oncology) said" not to tell family because of those damn insurance companies and how this could affect their insurance eligibility". In a way, I laughed @ the comment but understand the reality at the same time. Anyway, I pray, for all of you and hope to see your names on the forum for a very very very long time.

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      Toril Kosberg 3 years ago

      Hello. IAm from Norway and have mgus. Iam very afraid. What kind of symptoms do you have? I have night sweeets and neuropathy, and a lot of other things....

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      Renien 4 years ago

      I was diagnosed with mgus with a new dr now all blood work is back and I didn't have any m protein levels .This seems odd to me I've had protein in my blood for about 6 yrs she said protein levels can go away and come back ,does this mean I don't have mgus I'm feeling uncomfortable with all of this!She the dr also canceled bone marrow test but did get mri of the back which showed degenutive Which I'm 56'yrs old .my question is is it possible that mgus goes away or was I misdiagnosed?

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      Virginia Karhan 4 years ago

      Hi together! My name is Virginia, I'am 49 yrs. old and live in Germany. I have my diagnosed from Oct. 2012. I'am Typ IgG Kappa.

      I 'am looking here to contact other people around the world with the same sickness. My email is V.Karhan@web.de

      Greetings from Vicky

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      jr 4 years ago

      MGUS is MGUS, It is asymptomatic. maybe some neurapathy, that's it.

      Other stuff is unrelated. if you have headaches, MGUS didn't cause it.

      If you have the poo poos, MGUS didn't cause it. If you are diabetic, It's not MGUS's fault.

      I have MGUS and I feel great!

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      sean 4 years ago

      Thank god I dont get any symptoms from my mgus yet,as I have also been diagnosed with a rare leukemia called essential thrombocythaemia,I suffer multiple symptoms from that,but I guess us aussies are pretty tough and just get on with things

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      sean 4 years ago

      hey mr moderater why dont you add my post,you added mr mgus von and his was abusive,fair go mate

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      jim 4 years ago

      Sean is correct,you all maybe need to get on with your lives a bit

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      mgusvonwillebrand 4 years ago

      Hey Sean,

      Mind your own business bud! Until you have walked in my shoes.. You have no right to speak those words! I guess you DON'T HAVE ANY SEVERE COMPLICATIONS FROM YOUR MGUS... I do.. So shut your pie hole!

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      sean 4 years ago

      I think you people need to get I grip on yourselves a bit.Ive had mgus for 4 years,most people dont develop mm,you need to get on with your life instead of destroying it with worry.

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      Diana Lee 4 years ago

      I was diagnosed with MGUS approximately 5 years ago. Found by accident with a routine blood test. Referred to an oncologist because I had been taking Plavix since having deep vein thrombosis about 12 years ago. No cause was found for the DVT so a (former) doc suggested Plavix so that I wouldn't have to have blood tests every month to test for blood thinness. My current primary doc wanted reassurance from the hematologist that it was OK to continue with Plavix. The hematologist said "no more Plavix" but said he was more concerned with some other numbers from my routine blood work. I had more blood drawn and then went back. MGUS. Never heard of it. Had never heard of MM either. The numbers were enough of a concern that I had 2 24-hour urine tests and a bone marrow biopsy. Those were negative. I was stable until I had another round of DVT 2 years ago. The doc said he wanted to do another BMB. I wasn't feeling ill, had good energy, no bone pain, and everything had been stable. I made the appointment but canceled because I just wasn't feeling bad. My sister did some research online and asked if I knew that, according a 2008 report, some folks with MGUS had a higher incidence of DVT. News to me. I figured my doc would know that. He didn't. He was too busy to keep up on current news. I stopped going to see him and figured if I started feeling yukky I'd find another oncologist. I started having a few minor leg pains and hadn't seen an onc for 1.5 years so started seeing one again. I'm still stable. My kidney function is stable at about 2/3 functionality. M spike is 1.8. A little anaemic. Have low platelet count (up and down for a few years). The new doc is just watching and waiting. It's hard not to think about. If I didn't know I had MGUS I'd say I was pretty healthy for a 57 year old, menopausal woman. I do take Super-bio-curcumin (500 mg 2x per day). Hoping that's helping keep me stable. Add turmeric to lots and lots of foods. It's just good to read other folks' experiences and know I'm not alone in feeling the way I do about it. I, too, am a Christian and know this isn't the end, and that I won't leave here before my time. But the brain has ideas of its own when trying to tell it to stop thinking about it.

      I'll be praying for all of us with this malady.

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      katwatts58 4 years ago

      I found this site by accident this morning. I was diagnosed with MGUS October 2012. I had been suffering from massive migraines, had been in the ER twice for the pain (thinking it was a stroke). They would give me a shot of something to relieve the pain. After dealing with the migraines nearly daily and given shots for the pain and on Imitrex, I decided to find a neurologist (she is one smart lady). During the neurological test, she found I had peripheral neuropathy and ran some blood tests, next thing I knew, I was being referred to an oncologist, who ran additional blood work, and determined I had MGUS. I see my oncologist every three months. Every three months I have bloodwork, and every six months a bone survey. He said it is IgG lambda. In addition to MGUS, I have fibromyalgia, arrhythmia, sensory peripheral neuropathy. Currently I'm waiting for my appointment for the urologist. I've had a urinary track infection for the past month that is antibiotic resistant and it has now gone into my kidneys.

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      tweed 4 years ago

      Dear Bettyamelia,

      Sorry to hear that you don't feel well. Continue to follow up with your doctors but I would give a lot of attention to Dr Kyle, as he is a huge expert in this field. I met with him and was impressed with his knowledge and compassion.

      I have not had problems with my blood sugars. Perhaps these two things are just happening at the same time, unrelated.What are your doctors thoughts on this?

      I had to make myself start exercising every day because I did not have any energy and my bones ached. After I started using a video (low impact target toning with some yoga thrown in), I honestly began to feel better. There are days when I honestly DO NOT want to do exercises and stretching....but I make myself do it and I cannot begin to tell you how much improvement I have made.

      I want to live forever and MGUS has pointed out to me that I won't....

      Take care

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      bettyamelia 4 years ago

      I am 39. I found ou I had MGUS by accident October 2012.I had been so tired that i could barely get out of bed and I thought I must have Mono. Doctors kept telling me I was depressed and being a hypochondriac and suggesting I take anti depressants.I knew that wasn't it.I have been depressed before but often would find exercise helped.There was no way I could exercise and when I tried to I was wiped out for the whole day.

      Long story short,the checked my immunoglobulins and found they were low. I had no M spike at all so that was a happy split second until my FLC ratio was off and I had IgA. I did a skeletal survey,all fine, urine tests, fine,and then my biopsy came mack at 12 per cent.I about fell to pieces and so did my husband.Then we called Dr Kyle and he was very reassuring and said he very much still felt it was MGUS. Then I started noticing how shaky and wobbly I had been feeling.I tested my blood sugar at home and was expecting to find it was low and it was 250. This kicked off another whole drama,with me especially failing glucose tolerance tests and my sugar going as low as 39 or 40 and having to be put on a drip in the ER. Sll my MGUS doctors except one are saying,benign,put it behind you,the othe done calls it SMM and wanst me checked every 2 to 3 months.I wouldn't be so worried if I didn't feel so exhausted and ill,but they think that is from whatever os happening with my blood sugar.They thin that the dental implant surgery I had in Septemeber had v high doses of steroids and narcotics and crashed my adrenals.My cortisol is low.I have started feeling low bloop sugar ish even when it is in normal range.

      Sorry to be so long winded but I just wanted to know if anyone else started having unstable blood sugar around the time of the onset or discovery of their MGUS? And night sweats?That is new but I have had 2 in 3 days now.Nowhere near menopause. I feel like my life is irreversibly changed.My dad died at 31 of a heart attack in front of me when I was a child and I have always had health anxiety.This feels like the most ironic thing I could possibly have. Bless all of you out there and thanks so much for providing this community. I get so terrified going the m beacon.I have a beautiful daughter I have to be around for her till she's at least in her fifties.Like the rest of you! xxx

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      lbrenn 4 years ago

      I am 41, diagnosed with MGUS a year and a 1/2 ago. I have a husband and two young kids, and I think about my condition every day. I recently read about chiropractics and how certain adjustments and diet can improve the immune system . Has anyone else gone the chiropractics route with any positive results (of course I follow the instructions of my oncologist as well)?

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      tweed 4 years ago

      It's been awhile since I checked in. I have been staying busy and doing well. I just returned from Haiti where I work as a nurse ( I go 2 or 3 times a year). It was a great trip and the strength of our patients there is remarkable! I am getting ready to hike El Camino de Santiago with my husband in the Spring. It is a 500 mile journey and we are getting very excited about it. We will start in France and end in Spain. Take care everyone.You ALL are an important part of my life. When I first found out I had MGUS, you made all the difference in the world.Love you!!!!!

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      Pam 4 years ago

      I am so glad to have read this page to hear how my feelings of utter despondency and fear are not unique , today is my blood test day, and I have all those feelings, I live in England and was diagnosed nearly three years ago, it doesn't get any easier, Thank you all

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      catherne asquith 4 years ago

      I am interested in forming a MGUS support group with the aim of amassing and living by all the info that we can find about preventing the onset of MM for as long as possible. I'm doing a detox, getting rid of toxins in my home, plan to order a water distiller, and hope to go to the Gerson Institute. I'm wanting to avoid acidifying foods (because they promote cancer). Chinese Bone Breathing exercisings.

      Check out the book Living Proof: A Medical Mutiny. It is about a guy who had MM and followed the Gerson principles. It is hard to stick to healthy living in a North American society which is why I want to form a support group of others that want to do the same

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      pattyjo10 5 years ago

      Correction: Whoops!! In review I see that my values for M protein should be reported in milligrams per deciliter. So the diagnostic criteria for MGUS is less than 3 mg/dL and for SMM is greater than 3 mg/dL. Sorry - my husband was trying to hurry me out the door to see new film. He's always keeping me busy so neither of us has to think about health problems. Great supporter!

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      pattyjo10 5 years ago

      Sorry for the length of this post but tweed and barb were asking about specific lab values. When I was first diagnosed 6 months ago I came across an article by S. Vincent Rajkumar which gave the following criteria. Pardon if it is a bit ambiguous but I was just taking casual notes and learning about terms at the time.

      Diagnostic criteria for MGUS and SMM:

      MGUS 1) M protein less than 3 g/dL

      2) Bone marrow plasma cells less than 10%

      3) absence of anemia, hypercalcemia, lytic bone lesions or renal

      failure

      4) progression to MM is approx. 1 % per year

      SMM 1) M protein greater than 3 g/dL

      2) Bone marrow plasma cells greater than 10%

      3) presence of anemia, hypercalcemia, lytic bone lesion or renal

      failure

      4) progression to MM 10-20% / year

      Size and type of M protein - IgM and IgA subtypes are predictors of progression rates.

      Abnormal free light chain (FLC) ratio at baseline is important predictor for progression of MGUS to MM.

      FLC assay quantitates free kappa (K) and lambda ("L") chains. (Chains are not bound to immunoglobulin.)

      Normal K is 0.33 to 1.94 mg/dL

      Normal L is 0.57 to 2.63 mg/dL

      Normal FLC ratio (K/L) is 0.26 to 1.65

      Patients wi serum FLC ratio less than 0.26 are defined as having monoclonal L free light chain. Those with FLC ration greater than 1.26 are monoclonal K free light chain.

      He also mentions a new risk stratification system that was developed to predict risk of progression based on 3 risk factors:

      1) size of serum M protein

      2) type of immunoglobulin

      3) serum FLC ratio

      Low Risk: serum M ,1.5 mg/dL, Type: IgG, FLC 0.26-1.65

      Risk progression at 20 years - 5%

      Low-intermediate risk: any 1 factor abnormal. Risk prog. 21%

      Intermediate - high: any 2 factors abnormal

      High risk: all 3 factors abnormal

      Wish I had taken more comprehensive notes but you may be able to locate his article through Google. Sorry for any errors.

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      tweed 5 years ago

      I don't know that there are specific lab values that define when you will have symptoms. What I have seen in my own life is that I had to get moving. Even when I am tired, I so stretches, walk, or so exercises. I do them when I don't want to....I do them when I am tired. I do them to improve my health. And it has helped me. I do not know what the future holds for me. But TODAY this is what works for me.So, Barb, I recommend keep moving! I am in my late 50's and this Spring my husband and I are going to walk the EL CAMINO from France to Northern Spain (500 miles.....) I'm excited, a little scared, but we are doing it. I know it will be hard but, heck, I'm going for it. The more I do, the better I feel. Natural endorphines probably. I don't want to just sit and wait. Take care.

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      Barb 5 years ago

      I was diagnosed with MGUS a couple of years ago. My IGM level was 600 at the time and now has gone up to 1300. Have been on monthly blood draws this summer and will be drawn again tomorrow. If still at 1300 or higher they plan on doing another ct scan, bone scan and skeletal xrays. Previously nothing has shown up on these. Should I be overly concerned about the increase from 600 to 1300 over a 2 or 3 year period? Does anyone know at what level of IGM, symptoms start showing up? I am 62 and feel pretty good overall. I do have osteoporosis and doing a work up for that was when I found out about the elevated IGM. I do sleep a lot more now, but that could be because I was laid off from my job a year ago and perhaps a bit depressed. I love sleeping in til 9 - 9:30 each morning now. Wishing you all the very best.

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      John 5 years ago

      I was diagnosed with mgus less than a year ago. Bone marrow had 5% plasma cells. Last July I had my 6 month check and felt very nervous starting a couple weeks before. I happen to work in a lab in a hospital that treats cancer patients so I know something about mm. I have a relative that went through chemo for lymphoma so the thought of the possibity of chemo makes me nervous. I really understand how you feel.

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      pattyjo10 5 years ago

      Hello everyone. I hope today is a better day for all of you. Just got the results from my blood test and skeletal survey. Good and maybe not so good. My IgG paraprotein is still low (0.3 g/dL - yaaayyy) and I am not anemic - good white and red cell count. But the bone survey shows lesions on the right hip. The doc and I decided to wait and do 2 more blood tests in the next 6 mos b4 ordering a marrow biopsy. I'm 71 and there is a chance that the lesions are osteoporosis. Hope so. I have 100% confidence in my doctor so I've decided not to cave in to a disease that hasn't harmed me yet except for a little balance problem. Going camping next month in Mammoth, Tahoe and Mt. Lassen and leaving the time bomb behind for a while.

      Good luck to everyone.

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      Alice 5 years ago

      I was diagnoised with MGUS one year ago. I have had the bone marrow bioposy, skeletal survey and have a small percentage in the bone marrow but survey OK. After six months had blood work done again and numbers rose. Went just today so will be anxioius to hear the results... I have CREST Syndrome/Sjogrens Syndrome (automuine) as well. Curious if anyone out there has either of these conditions. Oncologist (Hillman Cancer Center) thinks it could be related to these conditions, however, still have to be checked every 6 months.

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      Wenche from Norway 5 years ago

      Its been a while since I was her. I`ve found an amazing MGUS supportgroup on Facebook. Welcome everybody!

      http://www.facebook.com/#!/groups/mgussupport/

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      tweed 5 years ago

      Long day for me. I am in a trial in another state so I drove there today and had my labs done. When the results came back, it showed that I am anemic....... NOT good. They did a repeat of the labs and I left without the results. Went to Mom's and spent the day with her then drove home...about 3 hours. I couldn't stop my brain...and tears. But when I got home, good news (email) with the repeat labs. Normal values. HUGE happy dance through out the house.....Thank you , God. MGUS is so hard sometimes.

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      tweed 5 years ago

      Tina, I would get the skeletal survey because if there is a lesion, it places you in the myeloma category. Although MGUS is a "wait and see" situation, once a lesion appears and you are diagnosed with myeloma, there are treatments for myeloma and the sooner, the better. I understand the concern with radiation. I had the skeletal survey. It takes a certain amount of time when you have it done but then you know where you stand.

      Good health and best of luck.

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      Tina 5 years ago

      I was diagnosed in 2007 I have been going with the flow. My IGg fluctuates and I have elected not to do the skeletal survey. I have done the bone marrow aspiration they said it was negative that was late 2007. Would you still recommend the CT or skeletal survey or is relying on blood tests good enough? I am not a fan of radiation so I rather avoid the above.

      All the best to all who can relate and thanks for posting such a blog about MGUS. I appreciate on the education of it all.

      Tina

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      tweed 5 years ago

      Lynn, I do not know of anyone in your area but there probably are some. You can look on the internet for doctors doing research in the field or the leading centers for MGUS and MM. They can assist you. Best of luck in your search and good health to your mother.

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      Lynn 5 years ago

      My mom is 70 and was diagnosed with MGUS almost two years ago. Her numbers keep increasing, but her doctors do not act concerned. She is now experiencing peripheral neuropathy and I feel her health is getting worse. I would really like to find a specialist that deals a lot with MGUS, as I do not feel comfortable with her current hematologist. We are in the Atlanta area. Is there anyone you could suggest?

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      clarey 5 years ago

      Hi Tweed, Thank you for the post, feeling much more positive today. Sorry for the rant, saying it makes it all seem better!!!I feel I have faced things that I hadn't before and reality of mgus just hit me. I have no plans on going anywhere other than somewhere hot n sunny with my gang in the near future. I am truly grateful to have this forum and to have all of you my friends, hit my fist real low since I was diagnosed in September and I am so glad you were all here. On-wards and up-wards hey. Thank you all again. Rant over..I promise. Keep strong guys.

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      tweed 5 years ago

      Clarey, Every time any of us have our labs coming up, staring us in the face, haunting us with all their possible power, we freak. I do it EVERY time. It's because it becomes reality again for me. After the labs and the evaluation of the results, I let it go. I allow myself to return to my life, my family, to everything I would RATHER be doing in my life. I know you love your children so very much. I do too. It is what makes this all so difficult. We all want to see our children hit their milestones. I can handle just about any part of this disease except saying good-bye to my children. I am not ready for that.Who ever is?But the GOOD thing is, we aren't at that point. We ARE making it. We ARE with our beautiful children. So, my sweet friend, hang in there. There have been times when I have said to my husband, that I wished I never even knew this MGUS diagnosis because it is the "wait and see" and it does cast that black cloud. But then I think, well, at least I am in a research trial and maybe someone can make sense of this disease and someday PREVENT it! Also, by tracking this disease in the early phase, I can receive treatment that will make a difference. It all boils down to the rush of extreme emotions.Although we all want to maintain the positive outlook, it is ok to remain HONEST with one another here in our forum. Take care, my friend.

      You will do well.

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      clarey 5 years ago

      Hi all, thank you for all your kindess, your words have truly lifted my spirits. I guess this is the only place that I truly let known how I feel. Are any of you like me? not wanting to cast clouds on everyones life when Mgus gets you down. I tend to bottle things up quite alot until every now and then it feel's like the bottle top is about to fly off. You see I feel I can tell you all that I worry that at 38 I am quite young to have this, I worry that my specialist needs to see me every month for blood work, I worry that I have two young children and that this damn thing is like a black cloud over my beautiful life. There I've said it. I hope my mood is not pulling anyone else down. Can't wait for results one more week then I can place Mgus back on the shelf for a few weeks. Anyway how are you all doing anyone have any news or tips to share? My chest infection much better..must have been the vino hey. GOOD HEATH TO YOU ALL. TAKE CARE AND THANK YOU.

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      tweed 5 years ago

      Dear Clarey, It's the peaks and valleys. So glad you found that chocolate and wine! Don't be hard on yourself and remember that we are all here for each other, through thick and thin, We all need to let down and when we do it here, it's to friends that completely understand. I hope you are feeling better and healthier. Take care.

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      Wenche from Norway 5 years ago

      Dear Clarey... I just want to let you know that I`m thinking of you and wish u all the best.. Pattyjo gave some fine advice and we should all embrace them. Take care.. I`m sure everything will be fine soon.. Many hugs from Norway

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      clarey 5 years ago

      Thank you pattyjo, did just what you said. Got my young daughters to choose a movie, ate anything that had chocolate on it and did have a large vino. Mind set not great at the moment, guess we all have these day's that's what this site is all about, sharing good and bad hey. Find it so good to be able to come on here. Thanks again. Im sure in a few days I'll feel back up there. Will post something happy next time I hope. TAKE CARE EVERYONE X

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      pattyjo10 5 years ago

      I wish I could cheer u up. Treat yourself this weekend. Dial up a favorite telly show. Re-read a fave book. Take naps without guilt. Soak in a long hot shower or bath and indulge in a glass of wine. Chocolate does wonders. Don't feel guilty about surrendering the weekend. Make it work for you. And don't feel sorry for moaning. We understand.

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      clarey 5 years ago

      Hey Guys, I've just signed to have a moan, feeling really rubbish at the moment, still have chest infection and have had to have oxygen plus steroids on top of the antibiotics. Just cant shake it. Waiting for blood results on the 31st. Just wondering does anyone else have to see their Doctor for bloods every month???Feeling really tired and have just cancelled weekend away... Sorry for being a moany minnie guys.. Hope your all doing ok, I really do. TAKE CARE x

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      tweed 5 years ago

      Hi Pattyjo, Yes, chocolate is in order here! Congratulations on the 50 yrs together, that's wonderful. Sorry about the neighbor's pit....I have a very aggressive rooster that attacks me and I am beginning to think he has pit in him too!

      The diagnosis of MGUS is overwhelming and putting the pieces together takes time. You learn something and it may take awhile for the info to really sink in only to have more questions arise. That's how we all navigate this

      new life. But because it is this "wait and see" condition, just keep educating yourself, go to your appt. and get on with your life.Less stress, the better we are, the stronger we are. These are important weapons. And isn't it more fun to HAVE fun?

      Take care

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      pattyjo10 5 years ago

      Had my followup appt. with the doctor yesterday about my second set of tests. The protein showed up in 2 tests but not in the urine His diagnosis is that MGUS is now confirmed. I had the full bone survey today. If any holes are detected in the bones, I have to have a bone marrow biopsy. If none are detected, I will have more blood tests in 3 months. What really bothers me is my reaction to his diagnosis. For 30 minutes or so I was in denial - listening politely, nodding head when needed, smiling bravely. I don't remember much - just that the paraprotein was a lambda and it was a fairly small amount - 0.3g/dl. If I am going to be a partner in the management of my health, I need to get my act together!

      This has been a heck of a month: 50th wedding anniversary, attacked by a neighbor's pit bull, and confirmed MGUS. I think I'll eat some chocolate tonight.

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      clarey 5 years ago

      Hello all, Thanks to both tweed and Wenche for the posts. Tweed hope your dad is doing well and of course you.. Skipped bloods today, bad I know, but have just started my new job in a homeless centre and didn't really want to explain that I needed time off or the reasons why!! I have rang hospital and re-arranged it for two weeks time. Should have gone sooner, but it's my next time off and to cap it all I got a nasty chest infection....Hi to Wet golfer, Im also from the U.K and have had excellent NHS support. BEST WISHES AND GOOD HEALTH TO YOU ALL TEAM X

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      Wenche from Norway 5 years ago

      Hey tveed... Thank you for your kind words. You are so nice. I feel for everyone in here, and you said it so right: We are all in this thing together!!! Good luck to you Clarey.. It will be good. Love you all.. and God bless..

      (I,am no sitting with my exams and I love it)

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      tweed 5 years ago

      Hey Clarey, Glad you are DOING life. That's what we all want, right? I will be thinking of you Thursday as you get your blood work done. You will do well. And we are always here for you and next time it will be one of us having our blood work and you being there for us. We are all in this thing together. I am thankful for my life outside this forum and thankful for everyone within in.

      Hey Wenche, It's exciting to take courses and learn new things. Just finished a great book and learned SO much. I hope the antidepressants make you feel better. It's so important for us to stay positive and happy. That alone improves our immune systems.

      Take care.

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      clarey 5 years ago

      Hi all, been busy enjoying my life for a little while so didn't feel the need to come on here. I have bloods on Thursday so once again I am back on here feeling the support that the site brings and for that I thank you all. Sending you all best wishes.

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      Wenche from Norway 5 years ago

      I ment courses with a univercity :)) I am of course afraid if these pills will effect my blood test!

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      Wenche from Norway 5 years ago

      Hi everyone... I must admit that I have startet on antidepressive treatment and it helps a lot. I was so tired of this fear that I surrendered. I will not recomennd this for others, but it helps me. I have started on college again (I am 50 years)and take courses. I dont`t like to take this medisin, but for me I could not see any other way. Take care. Love you all..

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      wet golfer 5 years ago

      Hi, I was diagnosed with MGUS in Feb 2010 after a routine blood test because I changed doctors and eventually MGUS was diagnosed. I must say my Consultant, Doctor and all NHS have been fantastic, I can't praise them enough. It's the lead up to the blood/urine tests which leave you in limbo land - being a complete basket case isn't far from the truth; then after you get the good results and no treatment is required yet, all you want to do is sit down and cry - it feels like you have been given a few more extra months of life, before the circle starts again. Although I try not to think about the possible MM outcome it is never far from my mind. Good luck to all those who aren’t needing treatment and god bless those who do.

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      Geri 5 years ago

      Hi Friends, Just stopping by to see how everyone is doing this weekend. Welcome to all who just joined and sending hugs around to everyone. It seems as if we spend a lot of time "waiting". Waiting for the day for lab tests. Then a week passes and you talk to your doctor about the results. It really takes the starch out of you after a long period of time. Learning how to live with MGUS is different for each one of us. Educating yourself, talking to others who share the same condition, taking time for spiritual matters and finding things you enjoy doing to keep your mind from leading you down a depressed state of mind are things we all have to work on. Life is not like others who do not have a condition that we share. When I read this column first the title "Living with a time bomb" really hit the nail on the head. We all have the power above with God and with ourselves to make our time count. For example if you have a desire to take art classes go DO IT! We all have special talents start using them no matter how you feel physically and mentally. Don't let MGUS have control over your life. Don't throw in the towel, LIVE. Waiting is not easy I hope to use my waiting time in a different way by watching my paint dry on a painting I've been putting off doing. Sending concern from my heart to yours.

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      tweed 5 years ago

      Hi Francesca. I am glad you found us. When I first found out I had MGUS, there were many nights I could not sleep and got on the computer to find answers and hope. I found both and hope you do too. Please take care.

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      Francesca 5 years ago

      Thank you, I am leaving in Italy and I found out to have MGUS I was not able to slepp this night , but your forum was realy helpful.

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      terriellen 5 years ago

      Tweed~ Yes, I am taking Pantoprazole. It helped during my IVIG treatments and the steroid IV treatments, but does not help with the Methadone. Maybe I should try a different med for the nausea. I will talk to my neurologist about that. I was supposed to go tomorrow, 4/25, but my appointment was rescheduled to next Wednesday, 5/2.

      Thanks,

      Terri

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      tweed 5 years ago

      Terriellen, Did you doctor give you any medicines for the nausea, something like zofran? It really helps.

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      terriellen 5 years ago

      Welcome, Pattyjo. Glad you shared your story with us. Sounds like you are pleased with your neurologist. I am fortunate to have a wonderful neurologist as well and I feel that is 1/2 the battle. You have to feel confident and comfortable with your specialists. I love my neurologist, hematologist and rheumatologist, which are all at Barnes Hospital in St. Louis, MO. Good luck to you and be sure to keep us posted.

      I have my follow-up with my neurologist on 4/25 and my 3-month blood work is also next week. It's amazing how quickly those 3 months go by. The doctor has had me on Methadone for the pain and honestly, I have a very hard time taking it. It makes me very nauseated and I just cannot hardly tolerate it. I am also taking Alpha Lipoic Acid and taking B12 injections weekly. Both have helped give me a little more energy, but still have the pain. So, back to the drawing board next week. I have not been feeling very well. I have a lot of pain in my arms and legs...especially shoulders, wrists, knees and ankles/feet. Sometimes my bones just hurt inside...that's the best way to describe it. I have started working out with a trainer and that has somewhat helped, but I can only do so much.

      It really is nice to have you all to talk to about MGUS and the issues that go along with it. Some days I am fine and other days I have a hard time and just need to vent. Today is one of those days. I'm sure it's because my blood work is coming up and I get a little anxious and nervous when that time rolls around.

      Keeping you all in my thoughts and prayers....

      Take care,

      Terri

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      tweed 5 years ago

      We should all be very careful with our diet and pesticides/

      herbicides. Berries, grapes, apples must be organic to be safe. No amount of washing these fruits will remove the chemicals as they go completely through the fruit. Tests have shown this repeatedly.Potatoes, too ,because they are in the ground that becomes contaminated with chemicals and they just "soak" in the stuff. Do some looking on the internet on this.....very scary. Here we are trying to eat healthy with all the fruits and veggies only to be ingesting harmful chemicals. So the best is to grow your own, obviously, and not spray. If that is not an option, then organic fruits and vegetables. They are more expensive but eating chemicals every day has a greater price. I have been switching over for awhile now. Sometimes I just can't get what I want in organic and then I have to decide if I will go without or eat "regular". Summer is great because we do grow some fruits and vegetables and have only done a small amount of canning/freezing. Maybe this year will be better. It just gets so busy in the summer when everything starts coming in.Thanks, Pattyjo, because now I will try harder,

      Peace.

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      tweed 5 years ago

      Hi Pattyjo, Good to always learn new info about MGUS and possible triggers. We live out in the country where people have encouraged me over the years to use herbicides and pesticides. I haven't used them primarily because it just seemed to me that if these chemicals kill weeds and insects, what about us? So I pull and pull weeds and swat bugs. Not with perfect results, I might add but.....I will pass the word on what you have brought to the table.

      I hope you are feeling better. Take care.

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      pattyjo 5 years ago

      My Hemaetologist also mentioned that the only correlation that has been made so far between MGUS and chemical exposure is with pesticides and herbicides. Apparently there is a swath of cases in the midwest that seems to match the swath of p/h usage on farms.

      That leaves me out. I don't use any p/h around the house or yard. However, in the past 45 years we have had the house treated 3x for termites.

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      tweed 5 years ago

      Hey! You guys are all the best! I think about you when I am busy doing other things and cannot connect here. I always wish you well. Whenever someone new (hey Pattyjo) comes to this site "to talk", it brings me back to the first few weeks after diagnosis .In the early stages of knowing I have MGUS, I remember needing each and everyone here to stay afloat. I still rely on you to balance this and daily life. But staying positive gets me farther than not being positive and I will continue that mode. Exercise makes me feel and function better too.

      So this is to you, my friends....thanks and take care.

      p.s. i will let you know how my dad does.....

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      clarey 5 years ago

      Hi Pattyjo, I hope that the rest of your tests go well. I am 38 and found out that I have mgus in September with a protien level of 29. I have had all the other tests and so far everything else is fine, I hope this will be the case for you. It's interesting as I too have been exposed to 2nd hand smoke for a large part of my life and when a was really young worked in reception for a chemical cleaning company where the fumes were really strong!!! good luck and keep strong. Also to Tweed I hope your Dad is ok, sending best wishes. Good health to all.

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      pattyjo10 5 years ago

      I was diagnosed with MGUS yesterday so I am still trying to sort out terms, tests and levels. Thank you to all for providing so much info. And I'm also so sorry that so many of you live under the threat of MM. Pardon me for such a long post but this has been an overwhelming 2 days and I just need to talk to someone who understands.

      I am a 71 year old retired Sr. Lecturer in Chemistry. I come from a cancer cluster family and although I have never smoked, I've been exposed to second hand smoke for 3/4 of my life. As a chemist, I have been exposed to solvents, radiation, organometallic cpds and asbestos for years and have been waiting for the "hammer to drop". Unlike many of you, I have never really been ill. Even when I've had serious illnesses (hepatitis, whooping cough, spinal fractures, osteoarthritis) I just zoom around like normal with few symptoms.

      This last Xmas I had a fall that couldn't be explained. One moment I was walking around a neighbor's pool and the next moment I was underwater. A neurologist diagnosed peripheral neuropathy. Subsequent blood tests revealed a protein spike. A follow up appt yesterday with a hemaetologist confirmed MGUS and more tests were ordered. I will learn the results in a week. So far I have no pain in ribs or long bones but I am plagued with lack of coordination, imbalance, and occasional paralysis in my hands. My favorite activity is bicycling but the hemaetologist said the dreaded word yesterday: "Tricycle" Biking is the hardest thing for me to give up. I did the AIDS ride when I was 60, riding my bike from San Francisco to LA and used to ride 30-50 miles a day for recreation.

      My hemaetologist was wonderful, spending more than 45 min to explain what was happening to me. He also assured me that statistics are in my favor. As to the dreaded bone marrow biopsy - he uses an anaesthetic which sends the patient into la-la land and wipes out memory of procedure. He's a saint.

      One of my co-workers developed MM 15 years ago. She was amazing. She felt well most of the time even during chemo. She chaired two chemistry conferences, designed a custom home for her family and traveled extensively. She lived 11 years and was doing well until an e-coli infection ended her life in fewer than 24 hours. I miss her terribly but I know now how to proceed if I develop MM. She showed me that you can have a full life and make the most of the time you have.

      Good luck to everyone.

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      Geri 5 years ago

      Hi Tweed and friends, So nice to hear from you and know you are doing so well in the midst of all that is going on. You inspire me to get up and move my body. The only exercise I get are for these fingers on the keyboard and you know that isn't too good. If I can work the rest of my body with the same enthusiasm as playing Scrabble I'd have it made. My best to you and your family. Interested in hearing more about your dad when you have time. Travel safe and take time out for yourself. You are very important to many people. Peace, hope and love to all who are dealing with health issues.

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      tweed 5 years ago

      Thanks Geri and Clarey for the encouraging words! We are still figuring out a lot with Dad's treatment and upcoming surgery.

      I remember trying to get exercise when my children were small, Clarey, and it was hard. I remember at one point running up and down our stairs in our old house to get exercise and also running up and down the driveway so I could still be near the children but also getting a work out...sure the neighbors thought I was a bit odd perhaps!haha I also had a thigh exercise machine in the kitchen and when dinner was cooking, I would do exercises then too. Now it is much easier because the kids are out of the house. I do it when I return from work before I have a chance to change my mind. And then it's over and the night is mine. Before I had children, I ran every day before I got home and then it was over. Once I got into the rhythm, I was set.

      It's late and tomorrow I will drive to see my mom and dad and spend the day enjoying them. Then back home and go to work the next day. Life really is good, just a bump in the road right now.......

      Take care. Good health.

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      clarey 5 years ago

      Ahh Tweed, your strength is a real inspiration. I am so sorry to hear that your father is having to go though this but I am sure that if he has your strength and termination the outcome will be good. I am so glad to be able to come here to off load any heavy thoughts or nagging questions, so thank you all. Hi to Geri, Wenche and JB to, hope your keeping well. I am trying really hard to get some exercise in, just finding it hard with two young children, mmm I wonder if running up and down the stairs for them all day counts haha. love to all.

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      Geri 5 years ago

      Tweed and friends, Thanks for your encouragement and at the same time my heart goes out to your father facing these treatments. I have an 104 year old auntie who had it and came right back as strong as ever mentally and physically. There are so many survivors today compared to years ago. I wish him the best and also your family. Tweed when you said "Everything changes when you see your own possible mortality" you are entirely correct. It seems as if my whole life was under a microscope when I tried to sleep before the test and the long wait to get the results. It sure makes you more appreciative of people in your life. Sending peace, hope and love to all.

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      tweed 5 years ago

      Hi Clarey, Geri, and everyone!I think we can all agree that this site is a lifeline for us as we navigate MGUS. Geri, you are right to strengthen your body. I think that it is the best defense and we can't just wait for our next test results. We have to DO THINGS, things that are important to us....they can be ever so small or the whole bucket list. Everything changes when you see your own possible mortality. Oddly, it's as much a gift as a curse.

      Yesterday my father found out he has colon cancer and I will help him with his journey. The good news is that today the treatments for all of these diseases are better then ever. Take care, stay well, and be happy.

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      Geri 5 years ago

      Hi Clarey, So nice of you to write and it is very comforting to chat here and share what we are going through month after month. Together sharing what we know helps take some of the mystery out of it all. I know reading what others have said cleared my vision to understand MGUS a lot better and to also understand what my doctor is telling me. I think he was surprised what I've learned. :) Yes I'll be happy to post anything I find that is beneficial to all of us. Peace and love to all of you.

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      clarey 5 years ago

      Hi Geri, so please that your results were ok, it can be such a tough time. I to find comfort in this site and think that for now we are all travelling on the same train. keep strong and positive. Hi Tweed, Wenche and JB hope your all ok, take care guys. Geri let us know how you get on with the research

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      Geri 5 years ago

      Wenche of Norway and Friends, Thanks for your words of concern and love we all need especially in time of deep stress and anguish. So happy to tell you my doctor gave me good news today" NO CANCER" was found after the bone marrow test on 3/29. Today is 4/9 a date I'll remember. The days between were so hard. Your mind really goes from one extreme to the other. I'll tell you the truth I thought my life was coming to an end today. Tried to prepare myself for whatever the news was going to be. Now I need to unwind from this and figure out what is the best to do for my body. I read that if your body is alkaline not acidic the cancer can not live in it. So I'm going to start reading up on making my immune system stronger and get rid of toxins. It's a more positive journey I'm heading towards instead of just waiting for my next lab test and doing nothing. I don't know where it's going to lead but I can't sit still and do nothing between regular lab tests. Each one of us owns our bodies and we must do whatever is best for it from all that is available and safe. God bless all of you wherever you are with your health issues.

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      Wenche from Norway 5 years ago

      Geri: I feel with you on this waiting time. Waiting for results is a nightmare. I am sure you will be fine. Stay strong. Lots of love to you from Norway..

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      Geri 5 years ago

      So thankful for this page reading about others who share the same MGUS. For 10 years my lab tests have been okay. But as of last month the doctor said he wanted to do a bone marrow test and now tomorrow I'll get the results. I've never been so upset about anything this serious in my life other than when my family members were very ill. When it's your body it's really a hard pill to swallow. I think teh waiting is what is making me so sick to my stomach. If I can make it through a few more hours and know the news whether bad or good then I can deal and face it. The more I read the medical pages about MGUS and what it can become I get so upset. I want to prepare myself and at the same time I don't want to know. What a mess MGUS does to you emotionally. Over the past ten years I've tucked it away but when lab test time comes up I get all tense can't sleep etc. until I have waited seven days for the results. Enough said for now. Just wanted to check in with all of you and let you know you are not alone we are all in this together. Support is great! Thanks for being here.

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      tweed 5 years ago

      Looks like our concern about Habee is over. She has Hubs by Habee and writes about all kinds of topics. So I guess she just moved on from this site and is living life. So relieved she is out there still.