August 30 2010 post. When, in early 2006, I told my best friend that I had progressed from benign MGUS to the, er, less benign condition of SMM, or smoldering myeloma, she didn’t look shocked or tell me she was sorry or burst into tears (all of which I deeply appreciated!). It’s not that she didn’t care, of course. She is just a no-nonsense, positive-thinking person. And she almost immediately remarked, “You know, I think A. has something like that, too.” “Really?,” I answered, surprised.
And so we began chatting about A., who has been her closest friend since they were in the same class in high school…Well, it turned out that my best friend was right: A. was diagnosed with MGUS when…get ready for this!…when she was in her 20s. Since she is now in her mid 50s, that means that she has had MGUS for more than half her life…
This is actually my second post about A. My first post dates to 2007, when she swam across the Strait of Messina: http://margaret.healthblogs.org/2007/08/06/swimming-across-the-strait-of-messinawith-smm-an-inspiring-story/
There is more to this story…
A few years ago, A. had breast cancer and went through a number of chemo treatments, which didn’t, however, have any negative effect on her MGUS. Her numbers remained stable. And I am happy to report that I saw her test results last spring: they were excellent. In fact, her numbers place her in the MGUS, not SMM, category.
In case you are wondering, no, she still cannot interpret her own blood test results. She relies on her haematologist for that. As I said in 2007, some people are better off not knowing too much about…things…
But wait…why am I writing about A. again today? Well, mainly because every so often I receive private messages/blog contacts from people who have been recently diagnosed with MGUS and SMM and are scared of progressing some day to active myeloma. Well, to be honest, that nagging little thought is in the back of my mind, too. And sometimes, especially when I become aware of a new ache/pain, the notion that it might be caused by myeloma manages to push its way for a nanomoment to the front part of my brain. Then Reason and Optimism take over and push that notion back where it belongs…
That back-of-mind thought is why my research and my blog are so important to me. I receive many private (and public!) thank-yous and compliments, which are all very much appreciated…but the truth is that I do all this reading and research mainly because I am fighting for my own life. I am fighting to remain stable. And (why not admit to it?) perhaps I am fighting not to be scared…
Doctors tell us that there is nothing we can do. All we can do is “wait for the other shoe to drop.” I doubt they realize how disempowering that is…and how helpless and frightened and alone it makes us feel…
But hey, I am not going to sit back and just…wait. I am going to keep on learning as much as I can about this cancer. I am going to keep updated and test (on myself!) a few, scientifically proven, non-toxic substances, obtained only from reliable sources, of course…Oh dear, I’m so sorry…I digress, as usual!
Another reason for today’s post is that I have had a few exchanges with a young woman who has recently been diagnosed with MGUS and is very VERY scared. She always gets severe panic attacks and even colic pains before going to the lab to have routine blood tests done. Oh, and sleepless nights, too. I have tried to be as reassuring as possible. But this morning I realized that, instead of reminding her of all the favourable statistics (= only a very small percentage of MGUS folks will progress to active myeloma, blablabla), perhaps the very best thing I could do for her and others would be to provide a few more details about A.
After all, A. is not a number. She is not a statistic. She is a real, living and verrry active, wonderful person. And she has become a dear friend of mine (one of my close, card-playing, laughing buddies, in fact).
Still with MGUS.
After all these years…
I have MM. Stage 3 IgG lamda. Now in remission. Did juicing and supliments. Plan on visiting italy and I will be in abruzzo. Would love to talk. I was diagnosed March 3,2010. Ended up with 7 broken ribs and 6 compressed vertebrae. I did get a bronchitis infection before being diagnosed. I asked my doc if I was mgus or smoldering and he said neither. That it is remission. I am not sure he knows so I am changing doctors and going to a mm specialist. Many people are calling me for advice and I tell them bout your blog. Mary Ann W
Liebe maria ann,
ich Karl habe auch MGUS IgG lambda (Wert 1837 mg/dl).
Was nimmst du dagegen ein?
“perhaps I am fighting not to be scared…”
I understand that. and trying to be in control of SOMETHING in this disease process – it feels like trying to drive a bus with no steering wheel. I think the scariest thing was when my patient progressed past smoldering, but now it doesn’t seem so scary or like the end of the line.
I have just been diagnosed with MGUS… well, actually I still have to get some more CT scans this Thursday to make sure there are no holes to be found anywhere in my bones. Now I’ve discovered your blog and just read this post on A. Thank you for that. Right now I’m still wondering what will be best for me: find out as much as I can about it or just try not to think about it too much and rely on my doctor only. I think I’ll read a little more on here though. Because I’m sure there must be something one can do to improve the odds instead of just sitting around and waiting. Thanks for your blog and all the best for you!
I was diagnosed in late July, so I understand exactly how you feel! I had the skeletal survey–no lesions, although i do have substantial osteopenia and osteoporosis. I have been prescribed bisphosphonates. I’m trying not to dwell on the possibility of progression at this time…I am being monitored every six months. It helps to have someone to talk to, and there’s a Facebook group if you’re interested. Best of luck!
What a wonderful resource you have created.
I was diagnosed with MGUS in March and have a 3.0 g/l Gamma band with no Gamma suppression at this point.
My very friendly Hematologist was reassuring and other than blood tests twice a year and an annual bone scan says he hopes never to see me again. I asked him about non-medical interventions and he was not forthcoming so your site is the first that offers me some direction on this approach.
The BMB and bone scans were scary, especially as the young doc who did the BMB said she thought I had smoldering vs. full blown MM which didn’t sound so bad until I looked it up. I also had a follow up CT of my head, as there were some questionable spots on the bone scan.
My primary doc also got nervous about my rib and back pain and sent me off for a nuclear medicine whole body scan (rather unpleasant as I was apparently radioactive for a couple of weeks afterwards and was told not to hug my kids.) They wanted to repeat it after 3 months but the oncologist agreed with me it was unnecessary. The good news is that everything turned out normal.
I have had ongoing bouts of chronic fatigue for the last three years since a bout of pneumonia and get knocked over very easily by small viruses etc. I have young kids so this is a regular issue as I am in the school germ pool. No one has acknowledged this could all be related to the MGUS!
I am going to check out the curcumin idea.
I loved your piece on A and realize from my own experience that being told you may get MM eventually sounds like a death sentence at first, but I am also fortunate at least for now that my scores are so low which no one really bothered to explain to me in any detail.
Good luck to everyone on teh site. We all deserve to live long and uneventful lives!
I was diagnosed with MGUS and had a bone scan that proved negative. My blood and urine was tested but I refused the bone marrow test because I felt it was too invasive. Should I have the bone marrow test?
Also my oncologist called it smoldering myloma. I still dont know the difference between MGUS and Smoldering Myloma. Can you explain or point me to where its clearly explained in the website.
Thanks in advance
Mary ann. What treatemnt did you have to get into remission?
Hi Fred, you mention your blood and urine were tested…what were the results? Did you have an SPEP, 24 hour urine, FLC assay, etc? How was your CBC…calcium, creatinine, etc. These would be important considerations. The bottomline is that a BMB is the definitive test for myeloma and its precursor stages…SMM and MGUS. I have had two. They are not exactly pleasant but after both, I was able to go to work, etc. immediately thereafter. For your own peace of mind, I would consider having one done. I would also highly recommend that you go to an actual myeloma expert, not a general oncologist.
Hi, The story of A. reminds me of my own story. I have had MGUS for 11 years now….but not the normal MGUS. I have Bence-Jones protein in my urine which is causing damage to my kidneys. But I have twice been through the rounds of tests to be sure I don’t have MM. (I have had a total of 6 biopsies, I get a skeletal survey once a year). I was dx at age 42 and had 80% kidney function. At 54, I now have about 50% kidney function. The docs keep a very close watch on me and are all amazed that I have gone this long without progressing. All I can say is that you don’t know what the future will hold….at first I really wanted to get treatment, to be able to DO something about it. The doctors told me the watching and waiting and uncertainty is the hardest thing for patients. But it turns out to have been right for me as I am still healthy. I even was in the hospital for a week last year with pancreatitis and it did not affect my MGUS. What I’ve learned through all this is yes, educate yourself, but also, get good doctors and TRUST them because if they are good they know more than you will ever know. To Fred, you really should get the BMB to see what the level of plasma cells are in your bone marrow…you cannot get any kind of proper diagnosis until you know this. Good luck everyone.
Hi Alana, I am an avid reader and an occasional poster here. I was intrigued by your post. I am a light chain only kappa restricted smolderer. I also have Bence Jones paraproteins in my urine–about 1.5 grams per 24 hours. So far, my kidneys are functioning normally–creatinine is perfect. I was intrigued because according to the CRAB criteria, you have reached the R for the initiation of treatment. How does your doctor reconcile that? Is your % of plasma cells under 10%. Thanks. terry from NJ.
First, hope you are doing better. I just diagnose with Light Chain MGUS with Kappa. Could you please share your journey. I appreciate it.
Hi Terry, My situation was so frustrating at first because all the research I did said you can’t have renal dysfunction with MGUS. But, I’ve had two BMB and my plasma cells are under 10%. They’ve also checked for amyloidosis, and that’s negative, so they classed me as MGUS. I think I’m kind of more “in between” MGUS and smoldering, but they have never actually said that to me. However, I just moved to a different city with different docs. It’s been a while since my last biopsy, so I’m thinking they might want to do another. To people wondering about the bone marrow biopsy, it IS painful. With the second one I got the conscious sedation and that really helped.
You obviously replied here a while ago. But I hope that you can read this, or will get this via email.
I am 42 and am not sure if I have MGUS or MM. I too have an abnormal FLC ratio (0.06) and Bence Jones proteins.
I’ve been reading about light-chain MGUS and am hoping that I have that and not MM.
I also read about MGRS – monoclonal gammopathy of renal significance. Have you ever heard of this? (Since yours seems to be renal related).
If you have your own blog I’d be interested in following you, so please reply here if you do.
I have had MGUS for 10 years (since 2008) when I had a hysterectomy and they found a plasmacytoma on my pelvis while they were in there and a 2 hour surgery turned into 9 hours. I have had 4 bone marrow biopsies. None of them were painful for me. My M-Spike has remained at 0.7 for 10 years and I have it checked once a year. I have some fatigue, but I have not been sick in 10 years and I am now on Keto and I believe it is helping me. Also, be aware there is a protein in milk that is not good for MGUS or MM. You might want to Google that and read up on it. I love milk, but no more for me. By the way, I am 68 years young.
PS I should also say I have an abnormal FLC ratio and so for all these reasons put together they do say I am in the high risk group to progress.
After 11, going on 12 years of this I’ve gotten used to it and try not to think about it too much. In the meantime I’ve done an awful lot in my life over the last 11 years!
Hi Alana, I like your positive attitude about dealing with this situation. If you are in the US, you should certainly contact Dr. Landgren’s office at the NIH. I am in his study there of the progression of MGUS to SMM to active myeloma. He is one the the leading authorities of myeloma in the world and an amazingly compassionate doctor to boot. They will evaluate you for free and even reimburse your travel expenses. He will clearly be able to classify your level plasma cell infiltration, etc. as the NIH has the most cutting edge technology there is. Regards. Terry
I still dont know the difference between MGUS and smoldering myloma. Can anyone explain or point to a place where I can find out?
I was diagnosed in 2008 at age 42, IgG kappa, .56 m spike, normal freelite chain ratio. My recent BMB showed .3% plasma cells, which was such a relief. But, I have a lytic lesion in my skull, one in my femur, and one “insignificant” finding in my spine. The radiologist says it’s too tiny to be a concern. I’m concerned. My oncologist says that I don’t meet the three minor criteria for MM, and still classifies me as MGUS. I have done much reading on the internet and seem to fit the criteria for indolent myeloma. I guess it doesn’t matter what it’s called, I just want to know what my risk is for progression, given my bone involvement. My doc says that my BMB was a huge indicator that this would probably progress very slowly, if at all. He says he will put me on bisphosphonates if my bone involvement progresses. I’m confused. Any thoughts?
Hi Lilly, I would definitely get a second opinion from another myeloma expert for your own peace of mind. I didn’t realize one could have multiple lytic lesions and still be MGUS. I do know the literature talks about myeloma plasma cell infiltration of the bone marrow as being “patchy”, i.e., you could normal marrow in one spot and abnormal marrow in other areas. Do you have any level of immune paresis? How are your other markers–calcium, creatinine, hemoglobin, LDH, CRP, B2M, etc.? Good luck
I have thought about consulting with another oncologist, but these lesions have been present since my initial bone survey in 2008. I have one new one in my skull that wasn’t there at that time, but no other progression. And since 2008, by dumb luck, I have seen three different oncologists – one went on sabbatical, one left clinical practice to go back to research, so now I’m with my third doctor that I just love. They have all seen the radiologist reports and have all said it’s still MGUS. Two reports described the lesions as possible “lucencies of osteopenia” or possible lytic lesions of myeloma, but the last report I had stated “lytic lesions.” The other tests you’ve mentioned have all been normal, with the exception of my IgG, which is 1620 (range to 1600). I haven’t had an LDH test, maybe because my platelets are always elevated (I have no spleen) and apparently an elevated platelet count will falsely elevate an LDH test. So again, I’m trying not to worry but…we all know with MGUS it’s hard not to. My next set of labs is at the end of April. My m spike went from .56 to .68 last time, so of course I’m very apprehensive about what these labs might show. I’m appreciative that so many on this forum are so educated about this condition/disease and really know what it feels like to go through this. I just don’t want to overlook something that I should be concerned about now. Like you, I’ve never read anything that says MGUS is MGUS if there is any type of bone lesion. Thanks so much for your reply. Lily
I am a newly diagnosed (nervous) person. Still not sure if its mgus or smm…waiting for result of BMB.
I am interested in contacting Dr Landgren, is he open to natural therapy ie: curcumin, or does he advocate chemo? I am not comfortable with my current dr and am looking for a ‘compasionate expert’. Your assistance is greatly appreciated
Please help me. I have Magus since 2008. I now have breast cancer. Stage two non hormonal . Scheduled for a lumpectomy and lymph nodes removed during surgery. They are pushing chemotherapy. I don’t know how or if chemo will affect my mgus. Will it push it into full blown mm?
I don’t have MGUS but did have a terminal lump removed, also removal of a ganglia for complete diagnosis (M.D.Anderson). Fortunately chemo wasn’t necessary—only 1 month radiotherapy. Have you inquired about this? Wish you luck. Just to let you know that chemo isn’t always the only alternative, but your doctors know best.
Glad to have found this blog – seems there aren’t that many dedicated to just MGUS. I’ve just been told that I have MGUS. I was in the hospital with pneumonia at the end of the school year (I’m a Reading Specialist) and they found a spike in the M-Protein in my blood tests. The doctor said it was 2.8 (she said 3.5 is considered significant and is usually associated with MM). I was worried that the number was close to 3.0. Not sure when it becomes Smoldering MM according to M-Protein numbers. I’ve been referred to a hematologist and she’s having me go through more blood tests, full skeletal x-rays, and I have the bone marrow test this week. It’s all very scary and I’m trying to find out as much as I can about MGUS, SMM, and MM.
Lou. Do you ask about difference between MM. and Walderstroms, which is an M spike?
I am just finishing testing waiting for results. I’m wondering what they’ll be. Had the BMB this week. Any people writing in this blog will certainly help. I’m not too anxious, but of course I feel like I want To know the results and figure out what is going on. The only reason I’m this far is because I’ve had itchy skin for months, with no rash. We tested for thyroid and vitamin D and allergies and on and on. Finally they found the M spike in the blood.
It’s good to have found this site.
I have MGUS initially doctors prepared me for much worse, so I was relieved that I had much longer to live than first expected. I was finishing writing a PhD thesis for Oxford Uni, since I became sick, mostly tired; I stopped writing.
But I know I will improve and get back to it. Initially I had very low energy levels, but with an improved diet and supplements such as B100, I now have more and more energy.
Hi, I just got diagnosed last week with this. It was found in a blood test. I have been having pain in my heel for about 6 months and 1.5 yrs with plantar fasciitis in the same foot. After the PF was healed last spring from PRP injections (platelet rich plasma) …the pain in my heel remained and two toes on the same foot became numb. I had a nerve mapping done and there was to some degree a showing of nerve damage. (in both feet). although, my Dr’s found that my sugars were not high nor long enough nor my high blood pressure a problem. This is where they went looking for more. I just had a 24 hr urine test and am waiting to hear back. It is a little scary, even though my Dr’s said not to worry. 🙁 Thanks for your site!
Hi my name is Wilma I found out I had MGUS I N OCTOBER IM WORRIED EVERYDAY DRVING MY HUSBAND CRAZY BUT I DON’T WANT TOO IM STOP WORRYING ABOUT SOMETHING THAT OUT IF MY CONTROL I HAVE SMALL KIDS SO ITS HARD FOR ME BUT AFTER READING THE BLOG IT HAS HELPED ME IN SO MANY WAYS …THANK YOU
I was diagnosed with MGUS last November ’14 and am very scared and worried about it. I have seen and read that for my age (50) I could have MGUS for many many years. While I believe this is basically good, I hate the thought of continually having to check the numbers two to three times a year and always wondering will this be the one where it changes and I have to start chemo. I try not to let that bother me, but it’s difficult not to. I wonder if getting a second opinion is a good thing to do when you are only diagnosed with MGUS and you have no symptoms. I’m not sure if my doctor is a MM specialist or not. He is a Hematology & Medical Oncology doctor. Is this good enough? I truly do like him though, so that helps. I guess thus far I’m one of those who just relies on what their doctor tells them, since I haven’t been following what my numbers are. I feel like I should, but I really don’t understand them that well. My MGUS was only discovered because I had blood in my urine for several months and had a CT done and the CT tech saw something unusual with my bone marrow. I was then sent to my current doctor who found the M spike and had me do a BMB which was negative. At this point I’m not sure what more to do. I feel like I’m letting it win by doing nothing, but they keep telling me there’s nothing to do and the numbers are all low. Does anyone else have these same questions? Maybe I’m worried for no reason. I do enjoy reading what everyone has been saying here, because there’s not much out there in regard to just MGUS. Thanks to everyone here and I wish you all only then best.
Hi John I am in exactly the same boat as you. I have recently been diagnosed with MGUS but don’t have the symptoms many have, for which I am grateful. I have the sweats and an occasional leg ache that’s about all. I hate not being able to do anything to help myself and my doctor just says the levels are low so it’s OK! I am going out of my mind with worry so if you find anything that will help, I’d be anxious to know. All the best to you and everyone on here.
I’m hoping someone can shed some light on the results of some testing I have had done. No M spike was detected (SPEP said pattern unremarkable), kappa light chains in the normal range, lambda low but the Flc ratio was high (4.3). However, calcium, creatinine, ldh, all normal. I have however had sensory neuropathy for the past year and a half, which is what led to these tests being done in the first place.
My doctor just sent me for repeat
Sorry posted before finishing. My doctor (hematologist/oncologist) just sent me for repeat blood work and I see her in 3 days. I am just so worried…..I have had bone type pain for a while now that comes and goes. Some days I have no symptoms and some days it’s quite bad. If the next set of results are similar to the previous, what testing should be done next? I suspect it’s flc mgus since no m protein was detected. Would a full skeletal x-ray and bone marrow biopsy be indicated?
Thank you for all your help!!
I did Hyperbaric oxygen treatments to get my mom to do it for her Alzheimer’s. When evaluated before starting I had quite low sensory responses and after several dives the sensory response is and has stayed normal.
Sensory neuropathy. When I was evaluated before hyperbaric treatments I have decreased sedation in several limbs and tingling in some. After about 40 dives Abd tested again there was full sensation in all limbs. I have MGUS monitored for Waldenstroms
Just found out I have MGUS two days ago. 56 here. did a 24 hour urine test and additional blood tests before they decide if I need to do xrays and see a specialist. My doctor says not to worry and that he has other patients with it who have never developed furthur. I asked what the longest length of time a patient has gone and he said 15 years with no changes. Made me feel better. I am a very physically fit man who works out regularly and this just blew me away. I hate even having to think about it. I don’t want to believe there is even the possibility of anything progressing. Blood test said the protein was igg in the gamma area. Paraprotein found was .6 d/gl and then when they did the test a second time it was .7. I know they did the light chain blood test and all of it was normal. Waiting for other tests. Is .6 and .7 number low? I am hoping that is good.
I was diagnosed 3 years ago with mgus. I am now 79 years old. Going to a hematogist/oncologist who Iike a lot but the only thing he does is have me get blood work – never did any other testing for diagnoses. My
M spike had been holding at 0.5 until this last test which jumped to 0.7. Will be seeing him tomorrow to discuss results. I don’t understand all this data – someone on this site said her m spike went from .56 to .68. Could anyone explain how this works. I hear that you have mm when it gets to 3.0. I figured that when 0.7 gets to 0.9 then it would turn into 1.0. Thanks for your help.
Not sure if this thread is still going…
I was diagnosed last year when I was getting checked out for neuropathy symptoms. I am IgG Kappa with an m spike of 1.5. I’m dealing with tingling in my calves, atrophy of calves, twitching all over, mild burning occasionally in distal end of quads, arch of foot, and my forearm. Does anyone else have these symptoms? It’s all very frustrating not knowing for sure what’s causing my symptoms. Trying to figure out if MGUS is the culprit. Thanks and good luck to you all!
Jon: I am 77 years old (young) and mimic your diagnosis. I have come to understand that my MGUS is shifted to MGRS and diagnosed with renal panel problems and prepped with fistula for anticipated dialysis. I exercise daily, am a former marathona, and have been physically active my entire life. Don’t smoke and drink alcohol socially. Lately, neuropathic symptoms are pronounced worse than ever. I am in the care of a nephrologist, onco hemo doc, endocrinologist, and cardiac specialist. My wife is a nurse and extremely helpful in many ways. I would like to hear more on MGRS, particularly as an outcome of the above. I prefer not to undertake dialysis since it is so time charged without any real assurance of recovery. I am too old for other procedures. Thank you
Do you have access to hyperbaric oxygen treatments? It is a long shot however may help with the neuropathy. Have they ruled out Waldenstroms.
I am now working on building up the amount of curcumin I take
One of my doctors suggested I look into eastern medicine
Thanks for the reply. I’ve never heard of “MGRS”… Is it monoclonal gammopathy of renal significance”?..just a guess! I would love to know what caused my mgus and accompanying symptoms. I have a hard time believing that a 4 year statin prescription was not to blame. It’s frustrating not knowing what the future holds. I keep reminding myself to focus on one day at a time and to be thankful for what I can do. Your m spike was also 1.5?… Jon
Jon: Thanks for the reply. There is a great review of MGRS in “Myeloma Beacon” on this site or blog. Appropos of your ‘statin’ remarks I have had allergies and adverse reactions to Pravachol, Mevachor and amlodipine with edemic reactions. I simply stopped using them. My gripe is that with the different medicines prescribed I have had bad outcomes (Actos, Avandia in the diabetes venue and others in different areas). My pharmacy is very adept at looking for problems in this prescriptive manner. My oncologist advised me that MGUS is a somewhat common only diagnosed with blood tests. As they find more ‘markers’ there will be more diagnoses. At 77 I hopefully have a chance for longer life. My kidney doc, I believe, feels that’s a real worse problem. My M spike? I’ll ask next visit. Best. Bob Fitz
Any survivors from IGA MGUS? I have been reading the most posts so hard to find anyone who have this DX? any advices and experiences… is it a high risk to go through?
(my husband got this result from Serum showed that his IGA is on the Beta zone.. will find the final result in few days) he has no energy, tiredness, pain in his body… his jaw is in pain, limp from his hip… lost lots of weighs…
I have IgA kappa in the beta region. I have been extremely tired. I have hip pain and am unable to stand in one spot for even two or three minutes. I have not had any pain in my jaw. I have numbness and pain and tingling in my feet and toes. (that could be from me having diabetes, but I have read many posts on message boards of folks with MGUS having it as well, so who know. There is another website called MyelomaBeacon that is very informative. It breaks down the criteria needed for each diagnosis, MGUS, Smoldering Myeloma and Multiple Myeloma. There is also a great deal of information about lab results. I have recently had bad problems that I think are gastro related, but I am not absolutely sure at this point. I have bad pains under my ribs and side but if I belch real loud, it relieves the pain for about a minute, then it comes back. I have also been losing weight and have not been trying to lose weight, although I need to. I have not had the skeletal survey or bone marrow biopsy yet. I have to get the skeletal survey, CT of thorax and a bone density done before my next visit to the oncologist in January.
Hi , I was diagnosed with MGUS 19 years ago when I was 55 , now I’m 73 , and every night I have night sweats , would like to know if anybody out there is having the same thing , this happens from 3 to 6 times during the night , I don’t sweat but am hot all over my body and I wake up exhausted ever morning .
Gene: I was diagnosed recently with MGUS–but have a low reading of 0.3, while greater then 3 is a signal for concern. At 85 years, I’m not too worried about myeloma, but the ITCH is getting to me! I’ve tried hydroxyzine, zyrtec, claritin, and all kinds of lotions, but no major success. Any experiencies? Gene
Hi, I was diagnosed with MGUS in 2011 by accident when checking bloods for something else. I have sensory neuropathy, which includes numb feet up to my ankles, pins and needles in both arms and hands from the elbows down, (worse in the winter, have to keep gloves on even in the house), loss of balance and awful night sweats. I was having 6 monthly blood tests, but after the last one, I had a letter from the haematologist to say I only needed them every year, I assume this is because the paraprotiene level has only crept up from 2.5 when diagnosed to 6.7 this last blood test. Up to now I have not had any X-Ray’s or scans done. Good to read comments from other suffers as I have not met anyone else yet with the same condition.
Ahoj, mám MGUS 5 let paraprotein z p?vodních 2,6 nyní 3,6. Mám progredující polyneuropatii nohou i rukou, poslední rok nerovnováha ch?ze-pády, necitlivost prst? nohou a rukou, nyní prsty nohou zcela nehybné a prsty na rukou ?áste?n?. To vše se vyvinulo za 5 let od po?áte?ního pouze pálení chodidel a to jen v noci. Kadé 3 m?síce konrola na hematologii a onkologii. Po?áte?ní testy rentgen CT p?ed 4 roky negativní a biopsie kostní d?en? 2 procenta vadných bun?k. Polyneuropatie nej?ast?ji nesouvisí s MGUS (jen 1/3) Nej?ast?jšíí p?í?inou polyneuropatie je cukrovka (3/4) alkohol, štítná žláza, deficit vitamínu B a další. U mne nic z toho nezjišt?no. Tento text je v jazyce CZECH Republic p?elož si pomocí Google.
Hi: My name is John and I am 53 years old. Due to severe neuropathy in my feet over the last year, I was recently found to have Bence Jones Protein my urine and an M-Spike. SPEP was negative. The rest of my bloodwork came back within normal range. I am a kidney transplant patient of 8.5 years and still have excellent renal health but I suspect that my regiment of immuno-suppressive drugs has something to do with my recent diagnosis. The oncologist/hematologist said that I show no evidentiary signs of MM based on my bloodwork but I was referred to another hematologist/oncologist at the same hospital where I receive my renal care. I won’t lie that I get worried at times but what helps me is when I think of people much younger than me who have faced cancer, MS, ALS etc. It’s life. I’m not sure I have it in me to be treated for any future MM diagnosis. I just want my foot pain to go away. I’m lucky to have made it to 53. Will see what happens at my next doctor’s appt. in January. Thanks and best of luck to all of you.
Has anyone ever transitioned off Warfarin and onto Curcumin. I am a 13 year MM smolderer and had PE in Sept. I was not taking Curcumin sadly, at the time ! Appreciate help–for now I take 5mg Warfarin per day.
I hope this encourages someone. I am in my 50s. When I was in my mid-20s, I started donating blood regularly, maybe a couple of times a year. I had a weird symptom with my eyes seeing shooting stars often(which resulted from bulging blood vessels in the back of the eye from increased blood viscosity). After many appts. with eye doctor and family doctor they diagnosed me with MGUS at 28. A few years later I went on a health kick for about a year. Cut out sugar(I always start with sugar on any fast I do), dairy, wheat, and most meats, I drank carrot juice with barley grass juice powder several times a day. This did the trick for me. I was retested for my MGUS and all blood work came back normal. I am still very attentive to any symptoms I have and get checked often for MGUS. I have had intense bone pain sporadically through the years and have had a BMB, which came back normal. I had a hysterectomy done about 4 years ago and lost about 7 pints of blood in surgery, with my history of blood donation and MGUS I am keeping tabs on any new symptoms. Since my surgery, I have had an athletes foot issue with just one foot which will not go away!
Cynthia, so you no longer have an M spike? That is amazing.
Try using vick’s menthol, lightly massaged into your foot for a few weeks and see if that takes care of your athlete’s foot.