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Waldenstrom's Macroglobulinemia Community
This patient support community is for discussions relating to Waldenstrom's Macroglobulinemia, non-Hodgkin lymphoma, monoclonal gammopathy of unknown significance (MGUS), multiple myeloma, and plasmapheresis.
Expansion to Include MGUS?
by alagirl, Feb 16, 2008 05:18PM
I wanted to get everyone's impression on perhaps expanding the forum to include MGUS - monoclonal gammopathy of unknown significance. Perhaps some of you were diagnosed when you had MGUS, and then it progressed to Waldenstrom's, although MGUS does not always progress, and of course, it can also progress to other cancers.
I think it might be helpful to expand the forum to include folks who are dealing with a diagnosis of MGUS so we can provide support and help with their questions as well. I know that many people are very frightened when faced with a diagnosis of MGUS and they don't know how best to proceed.
Physicians frequently give many different answers on how best to proceed medically and whether or not there is any early treatment that might be helpful for them. Some tell them that there is nothing at all that they can do. Others say that there might be some measures that could be helpful.
Additionally, there are varying statistics given to people on their chances of developing macroglobulinemia, multiple myeloma, and other problems if someone has been diagnosed with MGUS. I think its a very confusing issue - particularly for the newly diagnosed.
I thought that our forum here may be the most qualified to handle this topic and I also felt that handling this topic will help to enrich our forum and provide more information and ideas since it will engender more posts on a healthcare issue so closely related to Waldenstrom's.
Any thoughts on this from anyone?
I think it might be helpful to expand the forum to include folks who are dealing with a diagnosis of MGUS so we can provide support and help with their questions as well. I know that many people are very frightened when faced with a diagnosis of MGUS and they don't know how best to proceed.
Physicians frequently give many different answers on how best to proceed medically and whether or not there is any early treatment that might be helpful for them. Some tell them that there is nothing at all that they can do. Others say that there might be some measures that could be helpful.
Additionally, there are varying statistics given to people on their chances of developing macroglobulinemia, multiple myeloma, and other problems if someone has been diagnosed with MGUS. I think its a very confusing issue - particularly for the newly diagnosed.
I thought that our forum here may be the most qualified to handle this topic and I also felt that handling this topic will help to enrich our forum and provide more information and ideas since it will engender more posts on a healthcare issue so closely related to Waldenstrom's.
Any thoughts on this from anyone?
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I think that is a good suggestion.
I'm not sure of the present statistics for MGUS, but I'm sure a forum for MGUS will be helpful.