MGUS Community Group

Monoclonal gammapathy of undetermined significance. This is a rare disorder. If anyone wishes to contribute who has this, please feel free to join.

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/ MGUS Support Group

New to this diagnosis

Group FounderRosi
Rosi

          I was tested for an autoimmune problem about 12 years ago.   I was told at that time,  there were some strange proteins in my lab work. 


         Now,  some 12 years later I was referred to an oncologist.   I was retested more thoroughly and fortunately,  testing showed I was doing well.


         Overall,  I've been treated for Chronic Fatigue  and live a healthy lifestyle.  I'm told I'm doing well and that it's not an issue.   I set this up,


         in the event that someone might come on here who may also have this and share their experiences.   Presently,  I'm taking herbs and supplements.


                      I'm a senior person so have probably had this much of my life.   It seems they don't know too much about it,  the medical community.


unicornangel36
unicornangel36
I have recently been diagnosed with MGUS and seem to be really overwhelmed. They say there are no symptoms, but the more I have read about it, this doesn't seem to be true. I have very bad polyneuropathy, I'm tired all the time and almost every joint in my body hurts. Does anyone else feel like this?
Group FounderRosi
Rosi
Hello Unicornangel36, Ok. I am surprised to read your post. In all my time on here, I haven't heard from anyone who has had MGUS which it turns out to be what I had.. I was diagnosed in 2005. I also was told there weren't any symptoms. So I feel for what you're dealing with. I haven't had the neuropathy but I had a lot of fatigue and muscle aches In 2006, I was diagnosed with Lyme disease and treated for that for about ten years with alternative medicine. I was able to continue working for a while but I had to stop and take early retirement. My activity level has been up and down over all this time. This last year my MGUS progressed to WM. Now, I am being treated for that. I'd like to ask you a few questions. One is, are you working with an oncologist/hematologist? What part of the country are you in? and last but not least, I would be curious to know how old you are? Feel free to personal message me if you like. I have learned a great deal over these past two years. This is a rare disease and few doctors know how to treat it. I had to find a specialist to get diagnosed properly and receive treatment and testing. Yes. Many people have symptoms with it. There is an excellent site on Facebook for MGUS. That's where I learned the most and got motivated to find a second opinion. It took me a while, but I finally did it. It can be overwhelming to begin with, but there are groups, and doctors and people out there dealing with this and they know how to help and inform one another. Feel free to ask any questions and I'll try to answer the best I can or steer you in the right direction.