Hi Rocky 36
Interesting information that you posted.
As one of a few Forum members who have MGUS, I’d like to make a few comments on what is stated by both the Oncology/Hematology site and the Mayo Clinic.
Actually, about one percent of the population over 50 (and about 3% over 70) has MGUS. The monoclonal gammopathy can be associated with different proteins – IgM, IgG, IgA.
In a small percentage of these patients, the protein produced is an anti-MAG and the result is peripheral neuropathy. This occurs mostly with the IgM, but is also found to occur from time to time with the other two proteins.
In my opinion, by “association with CIDP”, they are suggesting that the very same description “chronic inflammatory demyelinating polyneuropathy” applies to MGUS as it does to CIDP. However, I have never before heard that someone with MGUS will develop CIDP (as a distinctly separate disease from MGUS). By association, I would think that they are suggesting that MGUS can lead to neuropathy.
I am a bit puzzled too by the Mayo clinic statement that it is the plasma cells that produce the antibody. Some of us take Rituxan which targets the B cells with CD20 markers, but the plasma cells, in my understanding do not have the CD20 marker. However, Rituxan has been proven to work. Therefore, some of the protein must be produced in cells other than the plasma cells. I am not a doctor or a biologist so my knowledge is rather limited and I have only learned all this stuff in the last couple of years since my IgM MGUS diagnosis and the problems of PDN. Because B-cells become plasma cells eventually, perhaps the trick is to eliminate those B-cells destined to becoming the “bad plasma cells” before they get there. I wish I knew more about all this.
There is proven to be a conversion rate from MGUS to various forms of cancer as you had listed of about 1% per year. This conversion rate was shown to be non-cumulative (1% year 1, 2% year 2, etc). Your chances are always one percent each year so the chance in year 20 if it hasn’t happened already is still 1%. But over a 25 year period, the chance of conversion to a form of cancer would be 25%.
Anyway, most people with MGUS don’t even know that they have it. Generally it shows up in a routine blood test which might include the protein electrophoresis.
I hope that my posting hasn’t merely confused the issue further.
Sorry to hear about what you wife has been through. I’d be interested in knowing more about her diagnosis. Was she diagnosed with IgM MGUS or one of the other proteins (IgG)? There are several of us who have this form of CIDP and are trying Rituxan, so your comments regarding her treatment are quite pertinent, albeit not good news if it is IgM without other complications.
I am relatively new here too, so many of the drug names which appear on the forum are new to me too.
I came across the following slide in a presentation on the internet. I don’t know if your wife’s doctor is following along a similar progressive path, but it may be useful as further information for you.
I sure hope that you and your wife can find the right treatment. I am really amazed to hear of all the things she is currently taking.
Hi to the folks in this thread. I am relatively new to the forum so I am still finding my way around and just tonight noticed the MGUS thread and the post from Dutch Girl asking if anyone else has MGUS.
I was diagnosed with IgM MGUS in September after 9 months of tests. I don’t think I have anything else besides the MGUS. At least they did not find anything else. I’ve had the peripheral neuropathy thing, first in the toes, then through the feet, then in the hands, then in the lower legs. At the same time there has been a gradual weakness that I notice when I try to walk fast, etc.
Treatment recommended is Rituxan – series of 4 infusions, one per week.
I’ll let you know how it goes. I have another infusion tomorrow.
Thanks for our reply. I have no idea what type of MGUS I do have and quite frankly I find the cooperation with neurologist and oncologist quite frustrating. I check up every 3 months, next September again, and thats for the blood part. I am sure to ask them more info and want the results this time so I know more details. Unless one asks one never gets all the facts. I was wondering whether MGUS can be halted at all, as it seems to gain terrain so to speak. Have just turned 57 and if the progressing rate is going to continue I will not be albe do to much of anything properly in a short time. How do you expenrience this and do you know if MGUS can be slowed down with any drug?
I live in The Netherlands, whereabout did your ancestors come from?
Take care and keep smiling (I always do :D)
[QUOTE=Iowagal]Does anyone else here have MGUS? I was found to have MGUS (Monoclonal gammopathy of undetermined significance) while in the hospital for GBS. It can also cause neuropathies so sometimes I am unsure if my weird aches and pains are GSB residuals or a result of MGUS.[/QUOTE]
Hi, yes I do have MGUS, was diagnosed in February and every 3 months I have to go for blood checkups. I also experience polyneuropathy in my feet and hands, and even my yaws seem to start feeling strange.
Does anyone experience the same here? I live in Holland, Europe hence my nickname Dutch girl.
Wishing all of you / us the very best and hoping to hear from you also on how you cope with muscle fallout/pain.