MGUS: Living with a Time Bomb

magdielqr 2 years ago

Thank you for this informative Hub.

susieq450 2 years ago

Thank you for such an informative piece and I am sorry to hear all you are going through.

Waren E 2 years ago

Switch to a strict vege diet ,and look up this fruit "goji berries" online,that should help control that thing a lot!

God bless!

Doug Irving 2 years ago

I know what you are going through. On January 15, 2010 which was also my 50th BDay and my 28th wedding anniversary, I was told by my PCP that I needed to go to an oncologist/hematologist. Luckily, I had experience working with most of these physicians in my area because I worked in the oncology unit in our local area hospital.I went to the oncologist today and because I have M-Spikes in both blood and urine she is going to run a battery of tests which I will start this week.If my levels have increased, I will also undergo a bone marrow aspiration. I wish you well and I will check in on your blog to see how things are going.

God Bless,

Doug

Doug 2 years ago

Thank-You so much, I will learn more this week about my latest battery of tests. Rest assure my prayers are offered up for you as well as all who live with MGUS and MM.

God Bless You!

Doug

Doug 2 years ago

Hi habee! No, there is nobody in my family that has had MGUS or MM. I did go last week for a bone marrow aspiration, I hope I don't have to experience that anytime soon again! I will return this Wednesday for the results, I'm a wreck. M-Spikes were in my blood, and Bence Jones proteins in urine, but I am trying to be as calm as possible about it. I will let you know what I find out.

Many Blessings,

Doug

Doug 2 years ago

No Habee, I was awake. But I do have a clean bill for the next three months anyway.

Thanks and take care,

Will check back soon!

Doug

Doug 2 years ago

Habee, you know even though my oncologist says there are no visable symptoms in my bone study, I am still havin pain. In my ribs, and I get these terrible spasms in the tops of my feet and ankles. It feels as if they're drawing upward and it hurts really bad. The pain in my ribs is spuratic and not always in the same place. I have had juvenille diabetes for years and so I thought the foot and leg pain was always neuropathy, since I know MGUS can cause neuropathy as well, kinda like a double whammy. But have you ever had any other MGUS patients descripe anything to you like that?

Take-Care,

Doug

AJ 2 years ago

I was diagnosed with a high IGM 23 years ago...am now 50. Have a level of 1700 and just started getting pain in lower back,feet and calves(not a burning or stabbing feeling - just tender and sore). My oncologist had me have a cat scan on Friday and I go back to him Monday for the results. Am terrified the MGUS has turned into multiple myeloma or WM ..but guess am just going to have to deal with what I'm dealt.

AJ 2 years ago

Saw him today, still MGUS and he is doing further blood work to determine if I should have plasmapheresis or go onto cortisone.(explained that the high IGM could be a factor re pains in feet/back/legs). Will keep you posted,

AJ 2 years ago

Don't know those numbers - my igm is 1700 (was 1200) - guess that's not high enough to be concerned its turned into MM. Saw a neurologist last week - he did a nerve conduction study - awful test and determined pain in back and feet definitely not related to high IGM but rather 2 nerves pressing on muscle in spine (radiculopathy??). Put me on Lyrica - felt awful from drug and taken myself off it...will call him tomorrow and so it goes on....

Doug 22 months ago

Hi Habee, I am so sorry for not dropping in sooner. I have been very ill. MGUS is still present and is now at 4.05. I have been out of work for over a week and have been very lethargic and chronic-fatigue is terrible. My poor wife is under so much stress with me being sick and she has been taking up all the slack and I just can not hardly take it. I feel so helpless and confused. It started over a week ago at work, I was pretty tired whe I woke up to leave for work , but I pressed on because I had so much I had to get done. It hit me mid morning, I became confused, extremely dizzy and could not walk. I have had c-scans, MRI, tons of lab work, now my oncologist is investigating lymphoma. My blood sugar is all out-of-whack because of everything else that's going on. Just don't know how much longer I can hang on here and am becoming severly depressed because of all of this. I can only ambulate with a cane now and it is very humbling for me because I am always so independant and want to do things for myself. I have fallen 15 times in the last 13 months so now they are investigating also MS. I let you know how it goes. God Bless You All!

Doug

Marigoldf 22 months ago

Hi = found you randomly on website and was so interested and sorry to read of your problems. I was diagnosed 2yrs ago with MGUS and it seems a condition shrouded in mystery. I was told that it may never cause me problems but like you I have regular checks. I was so iterested to read of leg and foot pain and tenderness in ribs. I have have both of these for a long time. The calf and foot pain keep me awake at night. My specialist said that the rib tenderness is not usually a concern with regard to the condition as it is mostly grissle and they don't seem to take notice of leg pain either. I was given amatrypeline for that but I don't like feeling dozy.

I had my last check in April and blood count was OK (they never tell me what it is but I will ask next time)

I haven't had urine tests since the first time, perhaps that would be wise too. Anyway, thanks for this site, it is good to know there are others out there. I do hope that Doug get well soon.

Rich  22 months ago

One thing that most people do not realize is that most arthritis is caused by an underlying infection if not normal wear and tear. In my case Lyme disease, Bartonella infection and Babesiosis caused my MGUS. Most scientistis now believe an infection is the underlying cause of MGUS. In many cases the body can supress the infection, but as years pass the body's immune system breaks down and MGUS, symptoms and symptoms from MGUS rear their ugly heads. I have a friend who had MGUS. His doctor thoguht, there has to be an underlying infection. Of course he had a lot of the symptoms of Lyme and coinfections, including burning, tingling, pain, arthritis and after three years of treatment his symptoms are gone and his MGUS is also GONE! He never tested positive for those disease, but had all the symptoms! Unfortunately there are NO good tests for those diseases so it has to be a clinical diagnosis. I am on the same course myself, even though I tested negative for those diseases although was a high positive for Babesia! I am getting better and my MGUS numbers are coming down! I had to seek out the right doctor....took me going through 30+ docs to find the right one to know what to look for and how to treat!

Sr. Sue 22 months ago

I have had MGUS for about 15 years with kiddney failure,

pulmonary fibrosis & a high level of Iga serum protein.

I don't live in fear but live in joy every day God has

given me.

Eileen  18 months ago

I just found out that I have Chronic Lymphocytic Leukemia. One of the tests also showed that I have MGUS. This week I have the 24-hour urine test, complete x-ray body scan and a bone marrow biopsy. Also 49, on the brink of my 50th birthday in March.

Thanks for the page! Helped clear up some questions. I'll find out what all this means in 10 days....

oxo1000 16 months ago

my wife has been diagnosed with MGUS. Here in the UK our consultant haematalogist has no treatment to offer. I was wondering whether anyone has used thymus therapy to treat MGUS and if so what have been the results? One supplier in germany has offered to sell us a 8 month course of injections for approximately 6000 euros. All feedback much appreciated kimex@lineone.net

ALETA OSTLUND 16 months ago

Hi,

i was wondering what nationality you are?

we have this in my family and we are from Holland (The Netherlands)and were told by some specialists studying Multiple Myeloma there may be some connection to the Netherlands

Thanks

Joy 14 months ago

This is an interesting thread. Rich, are you still out there? I also have Lyme, and possible babesia, which could be causing my MGUS also (currently rising, level 2.2). I'd love to find out what sort of Dr. you found who could treat all this, as mine do not see the whole picture either. Habee, do you know how to get ahold of Rich? Thanks, and prayers for your health also.

Rick 14 months ago

Hi Habee,

How are you feeling? I just found this site yesterday. I was diagnosed with MGUS in August 2009. I had no idea what the doctor meant when he walked in and told me that. I just didn't like having to go to an oncologist. At the time I was 47.

Since 2002 I have been dealing with a condition called Sweets Syndrome. A long story short: It is a condition where I break out and itch like crazy. My blood levels are all over the place and I am tired most of the time.

I am due for a blood test now. I haven't had one since 6/2010.

You're right about the ticking time bomb. I choose not to dwell on it and enjoy each day.

Keep us posted on your condition. I wish you and your precious family all the best.

wenche 13 months ago

Hi Habii.

Thank you for this site. I am from Norway, got MGUS in 2006 (Igm) and are now 49 yeras old. My levels has just gone up and I am terrified. Havent heard no one in my country with MGUS. Since 2006 I have always felt like I`m living with å time bomb. I wish you the best and

God bless all of you. Love from Norway

wenche 13 months ago

Habee...

I`m so sorry for your results. Ofcourse you are worried now. They may find that there is 5 % and not 10% plasma cells? I dont know what to say. I HOPE and believe this will end very good for you and your family. With all my love - Wenche

Rick 13 months ago

habee...keep us posted. You will do just fine. I am no expert on much but I have a good feeling that our attitude and look on life carry us much farther than any doctor or disease can dictate.

You'll do just fine.

Rick

Justine 13 months ago

Dear Habee, thanks so much for starting this site, it´s been real helpful reading your story and everyone´s comments.

I too was diagnosed with MGUS less than 2 years ago. I´m 47 now and it´s been terrifying especially since I´m living in northern Spain and struggle with the language barrier. I was referred to the hemotologist after a routine blood test and I´d never heard of this condition before, like most of you. During the first year, I had blood and 24 hour urine tests every 3 months and had the bone marrow biopsy (awake and with no sedation). This year, tests done every 6 months. My numbers have not gone up, thankfully, but they have never told me what they are. As it is, I struggle to understand what they say and have had to look on the internet for information but so confused still.

I also have terrible back pain, cervical and lumber, 3 disc hernias, osteoarthritis, degenerated disc disease, & terrible leg pain. I´ve been given amitriptilyn, Lyrica, steriods, antidepressants, tramadol and recently, morphine patches.

Everyone says that MGUS isn´t an illness and needs no treatment but how can we tolerate this constant pain, depression, nausea, fatigue and exhaustion ??

I feel for all of you and have you in my prayers.

msdnorway 12 months ago

Dear Habee.I hope I hear from you again about your situation.I had a M-komonent in my blood ten years ago but I dont

know anything about it. New blood and urin tests next week. My M-komponent is IgG Kappa ,six mounts ago I got the diagnosis MGUS. Thanks to you for informasion all of us who wants to know.Learn from yesterday,live for yo day and hope for tomorrow. All good wishses to you from Norway.

wenche 12 months ago

Habee... We are all thinking of you at this time. I hope with all my heart that you will stay strong. With all my love - wenche

msdnorway - hei der. Jeg er også fra Norge og har fikk påvist MGUS i 2006. Har IgM Kappa. Jeg har nettopp opprettet en blogg med spørsmål om noen der ute har MGUS (ingen respons hittil) Gå til wenchemolle.blogspot.com hvis du ønsker kontakt.

wenche 12 months ago

Habee and everybody in here.... I just want you to know of this site:

http://margaret.healthblogs.org/

I have started on CURCUMIN and will also start on vegan diet. Read what Margareth has found out. With Love

msd  12 months ago

Takk for tipset til wenche. fant din blogg men har ikke kommet inn.wish you all a good day.

wenche 12 months ago

Habee... Thinking of you every day. With lots of love..

msd... Skjønner at du ikke kom inn på bloggen. Har fikset det nå (du kan legge inn kommentar under "anonym")

Many Blessings

Marianne 12 months ago

I was diagnosed with m-gus 2 1/2 years ago and just got brave enough to look for a support group like yours. It is a comfort, but also very sad, to read that I'm not alone out here. I,too, "freak out" every 6 mos. when I have to go for blood tests. Each time I have gone so far, my monoclonals have gone up, so each time it gets a little harder to calm down and get back to "normal." Normal isn't easy when, like many of you, I also feel like I am a ticking time bomb waiting for a deadly disease, MM, to go off.

Most difficult is that there is no one to talk to. Friends and family are unable or unwilling to hear my story. All believe "this will never happen to you." This makes me feel that I am crazy, or weak, or negative, or as my sister suggested, need to be "careful what you wish for." As if anyone would wish for multiple myeloma!

I continue to search for just one friend to understand. In the meantime I find that my only solution is to keep very, very busy. And I pray to sleep through the night. Night time worries are the worst, aren't they?

I also count my blessings often and when I get really scared, I think Of a friend who has cancer and I say a prayer for her.

Love to each of you.

Wenche 12 months ago

Hi Marianne.

I am Wenche from Norway and I understand you so well. My feelings are just like yours. MGUS from 2006 and freak out every 6 monds. You are absolute not alone and I see that we all feel the same as you. We all deserve understanding and love. Many blessings from Wenche

Habee... Still thinking of you. With lots of love...

(sorry for my bad english language, I am norwegian :)

msdnorway 12 months ago

Hi Marianne.I think we all feel the same way, afraid and a little bit lonly. Thanks too all of you,it helps a lot to have some friends out there.I must wait until june for my next blood test and then I got too see a specialist. With love too everyone from msdnorway.(sorry for my bad english language too)

Jillybean 12 months ago

Hi to each and everyone of you

Thank you so much for this thread! I was diagnosed with MGUS 5 years ago. Sometimes I feel so sad that my life no matter how hard I try is forever under this cloud! I really do not like to feel sorry for myself but this is such a cruel situation to be in! I also have Lupus and when I have bad flares causing pain, I worry that in fact it could actually be MM! I have just received results for my 6 mnth check up which remain unchanged for 18 months, the lowest ever! However I see this time they did some additional tests for kappa/lambda. Confused.com!!!!!! I see the specialist on Monday and just hope that he will send me on my way for another 6 months!

My heart goes out to all of you.....I completely undersand the constant dread and the sheer effort it is to "try" and put it to the back of my mind!

I wish you all the love luck and hope in the world.

Jillybean

Mandy 12 months ago

O'my.. I have just been reading the post, I am sorry for all that have this condition. I was also today that I have this disorder. I just turned 35. Guess disorders don't pick age groups. I hope everyone here is doing well and the best to each and everyone of you.

Mandy

Feggie 11 months ago

Hello all,

Today I had my bone marrow biopsy. Yesterday I had the complete xray survey. Seemed like about 20 xrays. My m spike is .7

I agree with the term " ticking time bomb", I am a 59 year old woman, and it seems that if I live long enough, I may get Multiple Myeloma.

I have had severe leg pain in the long bones for years, so now am anxious to hear if this has anything to do with this. i had a patch of red skin, the size of a baseball on my chest. My dermatologist suspected Morphia and ran blood tests. This is where the M spike was discovered. I will see the oncologist on the 13th of July to go over all the results. In the meantime, I am glad to be able to read all of your stories.

Angie 10 months ago

Hello Everyone,

I am a 38 year old mother of 4. I found out I had mgus one year ago. I went in because my back was hurting. The doctor decided to run a series of blood test. He discovered that I had mgus. I too was "freaked out". I also suffer from a condition called Ehler-Danlos symdrome which is a connective tissue disorder similar to Marfan syndrome.

I spend many days dealing with pain and take many differnt pain meds. I just had my latest blood test and my numbers are increasing at a very slow rate. I do not have another appointment until Dec. I have had cat scans x-rays and urine test the doctor does not seem to worried but I can't help worring about the increses in my red blood cells and my m spike.

To wenche and msdnorway my ancestory is mainly Norwegian. My Dad was a full blooded Norwegian and my Mom is half norwegain and half Irish.

jeanlois 10 months ago

I too was diagnosed in June with MGUS. I learned about by having a DEX scan. My primary care doctor compared it with the first one I had 2 1/2 years ago and she was shocked at how much bone I had lost. First she wanted me to take fosamax, but then at the end of the appointment she said "wait a minute", I need to do some blood work, we need to rule out MM. I totally freaked. I already have had precancerous breast tissue and a lumpectomy 10 years ago. Anyway, she had me do an TNX urinalysis and came back with a higher than normal M spike. So she called right away and had additional tests, I guess it was the electrophoresis and came back with elevated IGA. So, then she sent me to a heamotologist who did more blood work which included the kappa/lambda ratio also abnormal.

He said I have MGUS, not to worry check back in 6 months!

What is that all about."Not to worry". How can you not worry? Anyway, I have been in touch with Maryann Yancy and will be starting in the NIH natural progression study. I figure they know more about this than just about anyone. Still, since I was diagnosed I have been depressed and having a hard time taking care of myself. I usually exercise, eat right, do yoga, and I just felt as though my body betrayed me.

I have had strange sensations in different parts of my body, this winter, I woke up with severe rib cage pain and went to urgent care, they said I had inflammation of the ribs because I had a flu a few weeks prior, now I think it was the MGUS. Anyway, I am so glad I found this blog. I know other people have this, but so little is written about it, and most everyone I know just says don't worry about it, you will be fine. I don't believe it. I think this is a serious condition that has not been studied all that well. Hopefully the NIH study and other research being done will help us.

Thanks for your comments. I have been heartened by reading them.

jeanlois

Wenche 10 months ago

This is Wenche from Norway. My country has been under attack and 76 people are murdered from a bomb and shooting. We all are crying and feeling helpless. We all must live to day. We dont know what tomorrow will bring. God help us all. Many blessings to all of you.

Feggie 10 months ago

I got my bone marrow biopsy results. No multiple myeloma, well below the 20% plasma cells that indicate MM. My husband doesn't want to discuss my MGUS, when I start expressing my fears. He tells me to put it out of my mind.

I still suffer from severe bone pain in my legs at night. The skeletal survey came back good, so guess that is an unexplained problem I have.

Glad there are others with this diagnosis I can share with.

Christina 9 months ago

Hi,

This is like reading my own mind! I am 36 and was diagnosed with MGUS 1 month ago. I don't really understand all the different 'levels' you're all talking about. The haematologist said 3 was normal but mine was 9.3 and then 9.7 one month later...how bad is this? Levels of what? I have another blood test in November and if it's gone up again I have to have a bone marrow test, I'm terrified.

I also have MSH6 which is a rare cancer gene making me predisposed to all organ cancers so had a total hysterectomy last year. I thought that was bad enough but MGUS feels more like a bomb that's already ticking!

I have 2 young children, no partner, no parents and cannot explain adequately to other family members just how scary this is. Why does everyone that hasn't got it just say, it'll be fine, don't worry. You're right, it is lonely and it has been great to read this thread and hear all of your stories, thank you.

tweed 8 months ago

Christina, Continue to find the MGUS and MM support groups on the internet and elsewhere. Go to the International Multiple Myeloma site on the internet. They have seminars and workshops all over the country at different times. These are extremely informative. It has the latest updates of treatments. The speakers are experts from around the world. You are in good hands. You will learn so much and will have the support from all the people you will meet there that are in the "same boat". We all feel alone sometimes with this disease, let's reach out to one another.

tweed 8 months ago

Christina, Continue to find the MGUS and MM support groups on the internet and elsewhere. Go to the International Multiple Myeloma site on the internet. They have seminars and workshops all over the country at different times. These are extremely informative. It has the latest updates of treatments. The speakers are experts from around the world. You are in good hands. You will learn so much and will have the support from all the people you will meet there that are in the "same boat". We all feel alone sometimes with this disease, let's reach out to one another.

tweed 8 months ago

I have MGUS. Like jeanlol, I too am in the NIH natural progression trial. I urge all of you to become involved in trials. There you will be treated by health care professionals that make our disease their lives. They want to find a cure as badly as we do. The average family doctor does not have the latest on this disease. Honestly, had any of you ever heard of MGUS prior to your diagnosis? I am a nurse who has worked intensive care, cardiac care, operating room, recovery room and med/surg and although I had heard of MM, I did not know anything about MGUS.

My own doctor,a highly respected MD "explained" MGUS to me. When I went to NIH, Dr Langrene gave me valuable and CORRECT information. What I am trying to say here is this, there are many trials out there- NIH, Mayo Clinic, and other places possibly closer to you. Find them and participate. We are all trying to find a cure IN OUR LIFE TIME and if we all participate, that means more info can be studied.Find the experts in this field to manage your health care. Your life depends on it.

Amber 8 months ago

I am a 33 year old healthy female that was diagnosed with MGUS in March, 2011. I think I’m one of the youngest persons out there with MGUS. My MGUS is actually Myeloma, but not Multiple Myeloma since it is only in one area of my body (aka solitary plasmacytoma). I had severe back pain for several months and eventually my back went out to the point of not being able to move. A tumor was discovered in my lower spine. I have had a back biopsy and two bone marrow biopsies. So far the plasma cells are only abnormal on the right side of my lower back. My kappa light chains are tested every two months and the numbers have gradually increased from 100 to 300 (can get as high as the thousands). I am also on a drug every 4 weeks called Zometa to keep my bones strong. So far I have not been required to do chemo. I have only had 10 radiation treatments to shrink the tumor in my lower spine and reduce my pain. I am doing fantastic and you can’t tell that anything is wrong with me. I went from not being able to walk, to walking with a walker and a back brace, to walking on my own with no pain. I don't worry about my illness and I have never been afraid. I’m a glass half full minded person and I'm living a happy fulfilled life.

Maureen 8 months ago

I have just been diagnosed with MGUS too and don't really understand it at all. Have been referred to heamotologist for a bone marrow test. Has anybody had it done? I have no symptoms that I am aware of except for night sweats, is this a normal part of it! Terrified! Nobody seems to know what the hell it even is, including me!

tweed 8 months ago

I have had two bone marrow biopsies. They are not bad. They numb your skin and it only takes a short time, less then 10

minutes. It all is overwhelming at first. Just get on the internet and keep searching for answers and contact NIH in Maryland. Dr Langrene is an expert that can answer your questions. He has several trials going on that you can become a part of. Once you agreed to the trial, your testing is free and you can leave the trial at any time for whatever reason. You need to get to an expert in MGUS. Your regular GP is not that guy. Take care.

tweed 8 months ago

I have had two bone marrow biopsies. They are not bad. They numb your skin and it only takes a short time, less then 10

minutes. It all is overwhelming at first. Just get on the internet and keep searching for answers and contact NIH in Maryland. Dr Langrene is an expert that can answer your questions. He has several trials going on that you can become a part of. Once you agreed to the trial, your testing is free and you can leave the trial at any time for whatever reason. You need to get to an expert in MGUS. Your regular GP is not that guy. Take care.

Maureen 8 months ago

Thanks tweed. A bit difficult for me as I am in australia lol. Not seeing regular GP anymore, have been referred to a heamotologist. Just have to make the 'dreaded' appointment!

tweed 8 months ago

Maureen, the hematologist will be of great value.He will be able to do the necessary tests and direct you from there.Keep looking up info on the internet. I don't know what people did so long ago without the internet. When you are first told about MGUS you feel so alone...as if no one else has it and all of your plans have been cut short. But it is not necessarily so!!! I just went to a workshop with the speaker being Dr Kyle...a great expert in the field of MM. The treatments for MM (and that is only IF you progress to MM) are so much better than before. The Vice President of the International Myeloma Foundation is Mike Katz...he is a 22 yr survivor of MM.and counting. I also met a man who is 9 yrs into MM and looks fantastic. So many people at this meeting looked and acted super. Having regular lives. So perhaps you can look into a seminar or workshop in your area and go listen to these speakers and meet people who are also in the same boat we are in. I have only been diagnosed for a few months and I have gone through a full range of feelings. I am at a point of optimism. I am staying healthy through exercise, diet, and doing what I want to do, esp. with my family. My MGUS was found through some blood work by a neurologist. He was not looking for MGUS. Surprise! Good luck to you.

tweed 8 months ago

Maureen, the hematologist will be of great value.He will be able to do the necessary tests and direct you from there.Keep looking up info on the internet. I don't know what people did so long ago without the internet. When you are first told about MGUS you feel so alone...as if no one else has it and all of your plans have been cut short. But it is not necessarily so!!! I just went to a workshop with the speaker being Dr Kyle...a great expert in the field of MM. The treatments for MM (and that is only IF you progress to MM) are so much better than before. The Vice President of the International Myeloma Foundation is Mike Katz...he is a 22 yr survivor of MM.and counting. I also met a man who is 9 yrs into MM and looks fantastic. So many people at this meeting looked and acted super. Having regular lives. So perhaps you can look into a seminar or workshop in your area and go listen to these speakers and meet people who are also in the same boat we are in. I have only been diagnosed for a few months and I have gone through a full range of feelings. I am at a point of optimism. I am staying healthy through exercise, diet, and doing what I want to do, esp. with my family. My MGUS was found through some blood work by a neurologist. He was not looking for MGUS. Surprise! Good luck to you.

tweed 8 months ago

For anyone who has questions, this is the MM Hotline #

1 800 452-2873.

tweed 8 months ago

Haven't heard from habee. How are you? And all the rest? Hope you are all doing well.

Denise Humphries 7 months ago

Hi Maureen,

It is great that I found a fellow Aussie to share things with as well as everybody else that cares to send messages to fellow members.

I was first diagnosed MGUS in 2/10. It was found in a routine blood test and I was told I either have sugar diabetes or leukaemia.

I then had to go for a specific bloodtest straight away and it was confirmed - MGUS.

Luckily I have an amazing GP who immediately referred to a Haematoligist/Oncologist and he is anazing also.

Bloods every 3 months and urince for Bence Jones indicators.

I went to see him again last Thursday with the following symptoms:- fatigue and bone pains in my bottom (the bones that I sit on. When I sit the bones of my pelvis just ache - it is so bizarre and I feel scattered in the head a great deal of the time which is terribly demorallising for me.

Add that to menopause - I am 61 years old.

I wish all of you the best of health that can be achievable with this condition and to Maureen - a special hello.

I live just north of Brisbane - where do you live?

Denise

I went for an x-ray today of the pelvis to see what is going on.

Those bone marrow biopsies are so cruel and thank goodness there was no sign of cancerous blood cells back in 2/10.

trisha 6 months ago

Hi everyone, I just found this site randomly yesterday. Up til then I really thought I was the only one out there who had this disease. How comforting to know I'm not alone. I was diagnosed 10 years ago and like you Denise, I'm also 61. After 10 yrs I have to say I'm still learning. I seem to have problems with my Igg. It was stable for about 8 yrs. at around 1600-1950, and then jumped to 2660 where it seems to stay. I also have fibro myalgia, lupus, osteo arthritis, and am now experiencing pain in my feet and calf pain, and tingling and occasional numbnesss in my fingers. Oh and did I mention the bone chilling exhaustion... so far 2 bone marrow biopsies and boy those are no fun! I've also had a CT and of course regular blood workups. Reading the thread here, it is a little unnerving that Habee hasn't responded for 5 months. I'll keep you all in my thoughts and send out lots of positive energy.

diane 5 months ago

ive just been diagnosed with mgus today and im scared about it reading all the comments has opened my eyes a bit more to it but i need to learn alot more

tweed 4 months ago

Hi Diane, I remember when I was diagnosed with MGUS I was scared and for the first time ever really faced the fact that I am not going to live forever (although I have always planned on lasting until I am 116 yrs old). But then I started reading things on the internet and got myself involved with a study that will benefit me and others with MGUS. I no longer live with that constant fear that I had initially. I live my life and go to my 6 month visits.I have been diagnosed less then one year and I didn't think my life would ever "return to normal" after my doctor told me I have MGUS, but it has. With one exception, I enjoy some of the smallest things in my life

that I thought I paid enough attention to but find myself paying even more attention to all the details. Take care.

Carlotta 4 months ago

Dear MGUS Group,

I discovered I had MGUS when my application for long term care insurance was denied. My mother died 8 years ago after a courageous struggle with MM. I'm 62 and recently retired from 25 years in education. My last assignment was in administration at a complex urban elementary school. The stress was over my head although I have always loved challenging work. I feel strongly that I have what is needed to deal with this for I am firmly grounded in my faith and trust God to not give me more than I can bear. I wish to join you on your journeys and have you in my life. Although my eating habits are fairly good I could benefit from losing some weight. Now I grapple with how fast and how slow I must go.

MileyYoda2010 4 months ago

Wow, I have been reading all your stories and it sounds like my life. I have been sick ALL my life and if I listed everything I have had and been through you would be falling asleep! I was diagnosed with MGUS IgG Kappa in 1998 so I guess that's 13+ years. I recently was referred to an onc. who just told me to come back once a year. I have severe back pain and hips and legs ache and I was also diagnosed with Fibromyalgia,CFS, Arthritis & IgA deficiency which I am convinced is somehow related to the MGUS. I know the frustration, worry and anxiety it can cause. I had a car accident 5 minutes away from the Hospital on way to see my Onc. I was so nervous! I got out of the car and burst into tears. The guy was so nice about it, thank goodness. I have a sister with NHL, another with Stage 4 Breast Cancer and my Father passed away from Prostate Cancer. My Father's sisters (4) had breast, ovarian, colon, bladder cancers and have all passed away. When you have a family history like this it makes you all the more fearful. I just want to say that I am praying for all of you, and wishing that we all didn't have to go through this. I downplay it alot because my husband and kids are worried. Life gives us lemons and we have got to make lemonade. God Bless and I will follow this to see how everyone is doing. Happy New Year 2012

tweed 4 months ago

Hey MileyYoda2010,

I can relate to the not talking about the MGUS much. I have told my husband but my children are all at the point where they have left home (youngest is in college) and are across the USA starting their own lives. Since it is MGUS and not MM, I have not told them or anyone else about it only because I want them to do their thing, find their lives in this world without the restrictions and any burden my possible illness has. As a mother I know how consuming this news would be to my mother who would only worry and worry...and I am not sick like I would be with MM so..... this is how I manage my life. My husband is wonderful and has given me so much support when I needed it. I will go for my next check up in a couple of weeks and it will be "in my face" once again and I admit that I am apprehensive about my blood work etc but hopefully the news will be ok and manageable and we can all go on. take care.

tweed 4 months ago

Please read Carole Giampalmi's article in THE MYELOMA BEACON. Very informative and another good site for further support and discussion from people diagnosed with MGUS, SMM, or even MM.

ruzlily 4 months ago

Hello everyone,

I thought I had searched every possible forum for people with MGUS and today I found this one. So many of you sound so much like me. I was 41 when I was diagnosed with IgG MGUS, m spike of .56, no bence jones protein, light chains normal. Now I'm 45 and I have had some progression to .68. My light chains are still normal, but I now have two lytic lesions, one on my skull and one on my femur. Not good. My oncologist did a BMB in September and thankfully my plasma cells are .3%. I don't understand how I can have bone lesions with such a low concentration of plasma cells in my bone marrow. I had to have an MRI because I had another suspect lesion on my spine, which turned out to be insignificant. My next appointment is at the end of March, so I'm actually waiting for a call from my oncologist to ask him what's going on. I found this out in September at my last appointment, and started dwelling on it recently, getting stressed for my upcoming blood work. I try to put MGUS out of my head, but sometimes it's difficult. I think about it every day to some extent, it's so hard not to. Like many of you, my spouse is patient, but I know gets tired of me focusing on it. After I leave an appointment with my onc/hemo, I am happy that I have six more months of "nothing to worry about" until I get stressed and sick about my next appointment. I was seeing him every three months for the first year and a half, then six months, then nine. Now because of my bone involement, I am back to six months. I am so happy to have found this forum, and thank you for letting me vent. It's a lonely feeling going through the uncertainty of MGUS, and I am thankful that I can share with others here. Wishing us all good health... Lily

connie 4 months ago

I am 45 years old and I was dignosed with MGUS igg at age 39. when first detected my levels were 14 then they jumped each year to 19. I began taking tumericic orally ( can get them from a healthfood shop and I eat curry very often and when I make it I put in extra tumeric. my levels DROPPED and have been stable at 15 for the last two years.I reccomend you all go to a web site called margaretes corner for more ideas on sup;ements to take to slow the progression down.

JRB 4 months ago

Hello there, I am 55 years old and was diagnosed with MGUS 2 years ago. It's very scary to know that it may develop into MM. I've told most of my family who live abroad but never said anything to my parents. My Mum is now suffering with MM and has been very poorly. Not able to speak, move or do anything for 4 months until for the grace of God two weeks ago she started talking again. Praise the Lord ! I've got my next appointment with the hematologist in 3 weeks time so I'm getting a bit nervous about it again. Last time I saw him was in 2011. I thought he was going to give me my next app for 3 or 6 months but he said in a year's time. Phew!I'll keep you all posted.

May the Lord bless you all and your families.

tweed 3 months ago

Just had my follow-up 6 month visit with the doctor at NIH in the Natural History MGUS Study. I was apprehensive about my lab work and what it would show. Everything is still looking good. No increases and even a decrease in my IGA. So I'll put it (mostly) behind me until the next visit in 6 months. Also had a mammogram (routine) that turned into an ultrasound of my axilla...also was normal but caused so much worrying....could I have breast cancer or lymphoma? Strange how I can go from basically worry free to near panic in such a short time.

Good health to all and take care.

clarey 3 months ago

Hello all, I am 38 years old and from the uk. I was told in Sept 2011 that I have mgus. It was found out during in some blood tests. The blood tests were taken by my GP when I was getting lots of infections and felt generally unwell. I was referred to a haematologist as my paraprotien levels were 28.5 at the time although have gone back down to 25 now. Does this mean anything to anyone. I was instantly given a skeletel survey which was fine and bone marrow biopsy, which showed just 1% plasma. These numbers mean nothing to me and I have kind of put my trust in the haematologist. Should I be asking more questions?? at the moment they keep saying that these protiens are quite high and need to see me every month with blood results. I am married with 2 children and try just to enjoy my life and put this to the back of my mind as much as you can....It's been a big help to read the comments on this site.

dawn 3 months ago

i have recently found this site as i tend to look up my diagnosis when i`m alone. i live in wales,uk and just reading thru your worries and prognosies has helped me no end. iwas first told i had hepc about 7 yrs ago and 2 courses o 6 months treatment had no success then 3 years ago i was told that i had mgus i was only 45 and had just become a grandmother ....what was my future to be ?? i also have osteoarthritus and cronic liver desease so some days i am really down in the dumps !! but i remain hopeful and i know there are worse people suffering than me . i`m not in any pain as such and i have regular check ups , i`m thankful for the NHS that we have in britain and i leave my future in my doctors hands .

clarey 3 months ago

p.s would be great if someone could give me some feed back on my numbers...thank you and take care allxx

terriellen 3 months ago

Hello All,

I am 48 years old and was diagnosed with MGUS about 6 months ago. My rheumatologist also believes I may have lupus (due to symptoms and ANA results being positive numerous times). After a lot of blood work, she referred me to a hematology/oncology group due to abnormal blood test results. My possible lupus diagnosis is somewhat on the back burner for now. I have also been seeing a neurologist due to pain and numbness. After more blood work, a nerve conduction test and skin biopsies, it was determined that I also have small fiber neuropathy. My hematologist ordered another complete set of blood work and determined I have MGUS. I just repeated my 3 month blood work and following are my results:

M-Spike: 0.2 g/dL - HIGH

Free Kappa Lt Chain: 8.38 mg/L (previous 15.67)

Free Lambda Lt Chain: 23.37 mg/L (previous 23.96)

Kappa/Lambda Ratio: 0.36 (previous 0.65)

IgG: 539 mg/dL - LOW (previous 1042)

IgA: 223 mg/dL (previous 207)

IgM: 233 mg/dL - HIGH (previous 259)

Total protein: 6.4

My Albium, Globulin, etc. were all within range, with some a little on the high end. The only other thing that came back HIGH is my ALT (SGPT), which is 47 IU/L. I also had a skeletal survey and there were no lesions at this time.

I have been on several different medications for the symptoms and nothing really seems to help. I have had several rounds of IVIG treatments and they actually helped for a short time, but I did get sick from the treatments. I recently was on oral steroids (Oct - Jan) and then had the Solu Medrol IV treatments (1000 mg) one time per week for 6 weeks. This did absolutely nothing for me, besides make me gain weight! My last IV treatment was two weeks ago. I have now been experiencing a nausea feeling, which just comes on all of a sudden and lasts about 1 -2 hours. This has happened 3 times over the last week.

Don't mean to be so lengthy my first time on here, but I just wanted to get the majority of my information out there. Of course, I am concerned that this will eventually turn into Multiple Myeloma. If anyone could give me some feedback on my test results, it would be very much appreciated.

Thank you so much,

Terri

tweed 3 months ago

To Clarey and Terriellen, please call the MM hot line number1 800 452-2873. Perhaps someone can answer your questions concerning your labs values. Best to you.

clarey 3 months ago

thank you tweed, is that a us number? recently I have been getting a stabbing pain in my breast, does anyone think this would have a link? ps. terri i wish i could offer some information but i think at the moment you may know more than me, all I can say is stay strong.

tweed 3 months ago

Clarey,It is a US number. You might try looking in your area too for organizations that are with MGUS and MM. I went to a conference for MM and learned some valuable info. The breast pain could be various things. Is the pain in the breast or in the ribs? I think we need to be watchful for rib pain as bone lesions do often develop in the rib area but since you have had a bone survey and all is clear there then you can rest assured about the issue of having MM there. With MGUS, we now pay attention to things that in the past we have let pass by. Have you had a mammogram lately? Just to be safe? Take care.

clarey 3 months ago

Hi tweed, so kind of you to reply...Think the pain is more breast than bone. I think that your right, we do tend to notice aches and pains more when you know you've got mgus. Had a mammoogram about 18months ago. Not overly concerned, but will mention it at my next blood test. I really try not to think too much about my condition and feel that I cannot worry over things that I can't change. Going to contact a number I have found for some more info, just so that if the time comes that I have cause for concern, i will be well prepared. How are you doing? take good care of yourself.

tweed 3 months ago

Hi Clarey, Things here are pretty good. Things were stable at the last doc visit a few weeks ago. I am packing to go to New York City. Won a trip for four ...2 nights at the Waldorf Astoria, First Class Fast Train, and Broadway Show JERSEY BOYS. When I won it I asked my husband when he wanted to go and he said it sounded like it was a girl's trip soooooo...I am leaving Friday for the week-end with 3 girlfriends. THIS IS GOING TO BE GREAT!!! I live about 100 miles outside of Washington, DC in the country. I've been to NYC before and I am ready to return. Hope you are well. Take care.....sounds like your pain is probably breast.

clarey 3 months ago

Hi tweed, lucky lucky you, sounds like your in for a fun time with your girlies. Just what the doc ordered hey. Wonder if I aproach the NHS would they fund me a fun filled trip to the big apple...heehee, I wish!! Glad your good. All fine here friend, cup half full and all that malarky. Let me know how the trip went.take care

tweed 3 months ago

Hi Clarey, the cup is half full, isn't it? Take care and I'll let you know how NYC is. It is just what the doctor ordered! Take care.

tweed 3 months ago

Back from NYC. Had a blast. It has to be good for your health to wash away all the stress of daily living and laugh with friends and enjoy a Broadway show. Right before I left, I received a call from one of the doctors at NIH where I am involved in a trial for MGUS. I received more positive news about test results. Made the trip all the sweeter. Take care.

clarey 3 months ago

AHH Glad to hear things are good tweed, what can I say, smiles and laughter got to be the best medicine ever...I go to doc mid March so not giving anything to do with MGUS much thought at the moment. I get a bit anxious the nite before seeing the doc though. I am planning the weekend with my lovely lot, may do cinema and food out. Happy days hey... keep me posted. Take care.

jb 2 months ago

I know how you feel. I was just recently diagnosed with MGUS. It was discovered during routine blood tests. I currently have 5.2% plasma cells. I work as a lab tech in A hospital so I have seen blood work for MM patients undergoing treatment and have A family member with Lymphoma so my MGUS is always in the back of my mind.

clarey 2 months ago

hello jb, I have just realised that the mgus must be more on my mind than I think, why else would I be on here eh!!?? How are you doing? i'm not sure what the 5.2% plasma cells is? is it your result of a bone marrow test? and have you had skeletal survey? I think I need to be asking more questions, I've tended to go down the just knowing what i'm told avenue. I think its because it secretly scares me. Im due to see my haematologist on Thursday so any idea's what I should be asking. I know that the paraprotein levels were 26 last month, which had come down from 29.5 in October and that my last bone marrow was just 1%.I hope you are well, take care.

tweed 2 months ago

MGUS is somewhere on all of our minds, isn't it? As hard as it is to ask questions because we fear the answer, we just have to ask. I think about the questions I didn't ask, laying awake at night worrying, then finally asking the question and then having the answer.....it is better to know.

The plasma cells....according to the Mayo Clinic, greater than 10% plasma cells takes you from MGUS to MM. 1% is great!!!!!! I am between 8-10%

clarey 2 months ago

hey tweed, had results this week, protien 25.7 and all other numbers were good. Seen a newly trained doc who said that she hadn't seen anyone with protiens as high as mine without MM. She couldnt believe all other numbers were fine!!which is good?! feel quite humbled reading what you last posted.I have started asking more questions because if im true to myself, yes I do want to know. Anyway how are you feeling?? in body and mind?? good I hope. Take care. Hope your ok 2 jb.

tweed 2 months ago

Hey Clarey, I am feeling great, to be honest. At one point when they were trying to figure my status out, I was with a doctor who put me at smoldering MM which frankly sent me down a dark road. But I went to an expert in the field and he put me in his trial and ran many, many tests (I usually do not have ANY problem giving blood but after SO MANY tubes, I found myself becoming a little light headed!!!! never said anything to anyone but 6 mos. later when they drew blood I sort of laid my head down to prevent the light headedness...and it worked) They staged me at low risk MGUS (looking at all the tests results)but I had one test that showed I have 97% of my plasma cells are abnormal which causes one to pause. I also met with Dr Kyle at the Mayo Clinic who assured me I am in a low risk status...... so I leave the worry behind as much as possible. But I must say at one point I was VERY sad. I was forced to see the end of my life and it was coming way faster then I ever imagined. I exercise every day, try to eat well...have been an almost vegetarian for years now.I do drink wine sometimes. I try to find calm in my life as often as I can. I work as a nurse, volunteer locally and also in Haiti (go there 2 or 3 times a year). I look forward to happy events and keep my appointments for MGUS follow-up. I have children that are all finding their ways out in the world, my youngest is in college. Because they are at such an exciting time in their lives, I have keep the diagnosis from them .I will share if I progress but I want them all to do what their hearts call them to do. I hear from them often, they are spread out. One is in New York City. One in California, One in Pittsburg, one 2 hours away in college. I figure in some ways this MGUS is like hypertension is to heart disease or stroke. It might happen or not. So keeping a watchful eye on it the wise thing to do BUT KEEP LIVING LIKE CRAZY!!!!!

How are you feeling? So you have any symptoms? How is your mind set? It is nice to share with someone who is in the same situation. My husband is supportive but he is not in my shoes. He tries to imagine but there is no way unless you are, in fact, in this position.

clarey 2 months ago

Ahh tweed, fab to hear from you. You sound like a really lovely person, with a lovely family. I have 2 children 13 and 6 both bright as buttons. Eldest is a real thinker very thoughful, kind. My little one is a minx, so wicked and funny. Obviously I have had times when I worry for them, not for myself. The deal is when you bring them into the world is that they get a mam and dad, so it's for them i get frightened, although If i have anything to do with it I wont be going any where. i too try to eat well and have started to add tumeric to everthing, which I have read is quite goood for Mgus!!!!??? My mind set at the moment is quite good. I am starting a new job at a homeless centre, which is a complete change of direction for me. Hoping to take my gang to Disney, Florida this year and love making plans for new adventures. I haven't told many people that I have Mgus, don't think people need to know.I have no symtons really, which is good. My hubby tries to be supportive bless, but don't really show him when I get an off day, why make everyone sad!! Well my friend, I was smiling ready your post, so I agree let us both LIVE LIKE CRAZY!!!! KEEP ON POSTING

tweed 2 months ago

Hey Clarey, sorry for the delay, our computer was out.How much tumeric are you taking daily? I have heard others using it. I started to and someone I email ( who has MM) said it made her numbers go up so she stopped and then they went down. But everyone else says their numbers improve. I think I will start too but don't off hand know how much etc.Wouldn't it be great to have our numbers so low "they didn't even count"? :)

Hope all is well with you. I am planning a week-end of doing yard work and hanging out. This week at work was busy! Only work 2 or 3 days a week but drive 2 1/2 hrs one way to see Mom every week. We go out for the day. Really is fun. When I am in all that Washington DC traffic, I listen to CDs and am teaching myself Haitian Creole. Helps pass the time. Gotta go exercise. Catch you later!

clarey 2 months ago

Hi tweed, Not measuring how much tumeric I'm taking just adding it to my foods. Got a good one from the health store and just putting it in with everything!!!?? will let you know how it goes. I really need to fit in more exercise, find it difficult to get much done, other than long walks. What with the children being young, I spend most of my time taking them to their hobbie's and clubs(which I love).Weather been amazing this weekend in the u.k think spring has sprung, we have a holiday home by a lake which we have been at all weekend, it was fab. Getting a bit of wrist pain at the moment, but not going to give it much thought yet. The consultant gave me a month off so I don't go for bloods until may, be nice not have to give Mgus too much of my time in April. Happy days hey. take care tweed.

Wenche from Norway 8 weeks ago

Hi all... I`m taking 4 grams of turmeric (curcumin) pr. day. My MGUS was discovered in 2006. Read this blog aboat curcumin:

http://margaret.healthblogs.org/

Love you all and God bless...

clarey 8 weeks ago

Thank you wenche, are you seeing any benefits from taking the tumeric??

Wenche from Norway 8 weeks ago

Hi clarey.. I began taking 2 grams curcumin just few weeks before my latest visit to the onkologist and then it was stabil, but now I`m taking 4 grams and will soon start on 5 grams (that is Margareth`s advice) The advice is 5 grams. My next visit will be in october and than I will see if this helps or not. I believe in this because so many has had good results. (Sorry for my bad english language :) Wish you the best clarey.. Lot of hugs from Wenche..

tweed 8 weeks ago

I was wondering, is there anyone out there that can tell us about their experience with curcumin? How their numbers have stabalized or improved ? Thanks. Good to hear from Clarey and Wenche! Take care.

clarey 7 weeks ago

hi Guys, thanks for getting back Wenche, wil start to take 2 grams from today, been on the web site called margarets corner, I have nothing to loose so going to give it a go. Take a look Tweed, let me know what u think. Hope your both ok. take care guys. Anyone with any info please post.

tweed 7 weeks ago

Hey Clarey, I will give it a look. Thanks. Hope you are doing fine. Also wondering about jb and how you are doing since it hasn't been very long ago that you were diagnosed. Stay positive everyone and keep posting.

tweed 7 weeks ago

It's been a year since I was diagnosed with MGUS. Shortly after that the company I am insured through was looking for better rates in insurance and I had to fill out many forms and reveal that I have MGUS and that perhaps I may not be insurable(?)... It was a stress to be sure. The company decided not to switch so I am still insured...... but I have to wonder/worry, will there be a time when I am not insurable? Any thoughts out there... any stories?

tweed 7 weeks 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.

Geri 6 weeks 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.

Wenche from Norway 6 weeks 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..

Geri 6 weeks 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.

clarey 6 weeks 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

Geri 6 weeks 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.

tweed 6 weeks 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.

Geri 6 weeks 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.

clarey 6 weeks 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 excercise 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.

tweed 5 weeks 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.

Geri 5 weeks 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.

pattyjo10 5 weeks 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.

clarey 5 weeks 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.

tweed 5 weeks 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.....

pattyjo 5 weeks 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.

tweed 5 weeks 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.

tweed 5 weeks 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.

terriellen 5 weeks 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

tweed 5 weeks ago

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

terriellen 4 weeks 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

Francesca 4 weeks 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 helpfull.

tweed 4 weeks 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.

Geri 3 weeks 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.

wet golfer 3 weeks 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.

Wenche from Norway 3 weeks 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..

Wenche from Norway 3 weeks ago

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

clarey 3 weeks 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.

tweed 3 weeks 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.

Wenche from Norway 3 weeks 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)

clarey 3 weeks 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

pattyjo10 2 weeks 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.

tweed 2 weeks 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

clarey 8 days 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

pattyjo10 7 days 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.

clarey 6 days 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

Wenche from Norway 6 days 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

tweed 4 days 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.

clarey 2 days 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.

tweed 47 hours 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.