Monoclonal Gammopathy

Jo w.......I am happy you are still here. I try to eat as healthy as possible. Instead of all the supplements, I eat alot of sardines in oil which is supposed to be very good. I also found that beef bothers my stomach so I try and eat at least some 1 or 2x a month. Truthfully, the less I eat, the better I feel.
I was dx with everything within a two week period going from doctor to doctor and was told, at that time, to put my things in order. So for all the MGUS people....try not to think about it.
You will all be here for a long time.
One thing for sure is that if anyone is going for a BMB.....try to find a doc that will put you to sleep! The first time they gave me tranquilizers...forget it! I couldn't stop screaming. So for all my BMB's, I go to my favorite onc....the one that takes care of all my families blood (I am in a research program for familial cancer...in the Bronx, NY)puts me to sleep.

Your Igg is normal! My Igm is 49 but at least higher than it once was at 10.

Regardless of all of this, I am still here after 10 years of this! The only good point is that every doctor wants me....that means trouble for me. They like the unusual cases so when I call, they listen. (smiling)

How did you know my name is Iris? I think I was told my SN had to be 30 letters long so I just used my doggies name's.

Hi Iris,

Your name is posted as your screen name on the reply page.

...sounds like you are, indeed, doing a fabulous job coping with your medical history and it's consequences. It shows alot of courage and patience, which you must have in abundance.

You're right about the sardines being superior to the fish oil supplements. Salmon is the greatest also. I like the canned. I stay away from beef and only occasionally will have a pork chop.

I'll stand by supplements, however. I believe certain herbs,etc. have helped keep the lupus and, possibly, the MGUS in a manageable range. I also credit supplements with the fact that I'm told I look at least ten years younger than my actual age - so that ain't bad either.

With your courage and perserverance, I believe you will continue to make liars out of the docs. I wish you well.

Howdy,

Was just roaming the web looking for information or groups about MGUS. 2 weeks ago the tests came back and had my first chat with the doctor yesterday about it. I'm still much in the dark as the big words tend to blow by me rather easy. I have more appointments coming up and sure I'll learn more than I may want to know. I'll drop by about once a week. Right now there are so many things going on I can't keep it all straight. I guess the Melanoma I had on my head has been the most serious so far. It was removed in 2003 and so far so good. Does anyone know of other MGUS forums online??

Hi..

I am also new to this forum I was diagnosed with MGUS with peripheral nueropathy in May 2006. I still feel that they have not done enough testing. They found the MGUS and stopped there after checking for MM. I feel that the MGUS is just coincidental. My nuero does not discuss or explain anything so I have researched on my own and am hoping to get a second opinion.

There is an excellent forum at www.choosehope.com go to discussion groups on home page. There is a forum exclusively for MGUS and everyone there is great. Hope to see you there.

Tired of the pain and not being able to walk from time to time. Wishing for a miracle....
Little Mermaid

I am 73 years old and have been going to a oncology doctor for eight years. I have PXE a connective tissue disorder also. I am begining to wonder if the connective tissue disorder may be a part of this MGUS? If you know please let me know.My blood test has not gotten any worse in eight years. Thanks Willene

I am happy to have found yhis sight. My understanding is much better now. My test(protein) showes 17, but it has been as high as 21. To see if we are talking of the same test, the doctor said 7 was normal. This I have been tested for since age 65 I am now 73 years old.
I also have PXE a connective tissue disorder and somehow I think the two are associated.
I am not told much by the doctors but I have other conditions also, I believe to be because of the PXE. Thank you for answering me and thank God it has not got worse. Willene

I was told from the haemotologist yesterday that I had this (MGUS) I have never heard of this before ... is this a rare thing?
I have been on the computer researching this and have scared myself out of my wits. I'm still not 100% sure what this is all about and not sure I want to know anymore at this point.
I don't see the haemotologist (sp?) until February 2007. Because i have this does this mean I will have to go for tests all the time?
I was also told that I have Mixed Connective Tissue Disorder in the form of Raynaud's, to which the doctor asked if i wanted to see a immunologist specialist (???) My head was swimming while i was in the doctors office so I am not sure i have any of this info right.
I am 31 years old. Can this happen at any age?
This has been such a horrible year so far with family members and friends of mine being diagnosed with cancer .... I feel so bummed out and scared right now.
Thanks for listening, I just feel a bit lost right now.

I was just wondering if the liver could be a part of MGUS. I also have PXE. There is so much to learn, I also have a fattie liver. Does any one know if this all is connected. Thanks Willene

Hi, I was diagnosed with MGUS 20 years ago (thats right 20- years!) It was really scary to start with as my Haemo gave me virtually no information, just that I would have to be checked every few weeks to check my levels. it then became every three months. This went on for 8 years and my haemo left the hospital. His replacement said I only needed to come annually which meant I could virtually forget about my 'illness' until my appointment came around.
By co-incidence, I have found this site today and my appointment is tomorrow.
My health has declined in the last couple of years and I am not sure if it due to my age (I am 64 now), or the MGUS. However, I just want to give some hope to people who are newly diagnosed. You can live with this 'ticking time bomb' for many many years.
Goldenoldie

Hi there,

I am 38 years old and I have just found out yesterday that i have got MGUS. I am still confused how should i feel. some how i am feeling guilty and sad since i told my mother the test was completely fine and she was so happy. My doctor told me i should not worry and I am not worried and I am not scared (maybe because i do not know about MGUS).

tell you the truth, right now i do not know how
to feel.can I want just compeletly forget about it and get on with my life?

Thanks for listening

sobrina