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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Watch and Wait ...What???

ForeverFaithful
ForeverFaithful

I was recently diagnosed with IgG lambda MGUS last Sept 2017.  A little history,several years ago I had a day of consistant facial numbness that progessed into my chest.  Then all of a sudden I had a temor only on the left side of my body.  My friend took me to the ER they watched me over night stating maybe TMI's could be the cause.  My doc sent me for a MRI of my brain considering it only effected the left side of my body. They discovered several white matter lesions on the right frontal lobe of my brain.  I then got sent to a neuro. doc who ran a slew of tests and found nothing.  He released me after a year of no more events happening.  Then March of 2017 I had been feeling like I had the flu.  My whole body ached and hurt so bad.  When sleeping I was consistantly having to move to keep from aching. As long as I was moving the pain was less noticable.  I had weird cold and hot sensatations feeling like a stepped on things there were not there. I headaches everyother day if not everyday along with no energy at all.  As it be I had a doctors appointment the day I woke up with double vision.  My doc immediately scheduled a MRI of my head and sent me to see the eye doctor. Eye doctor found nothing and MRI showed nothing unusal.  She then scheduled me to see a neuro about the MRI he stated it was normal and then wanting to do some further testing.  I had blood work done and then more blood work testing for Lypus, Lyme and RA.  Then a nerve conduction test that showed peripheral neuropathy.  Then more blood work which came back with high IgG levels and straight to the oncologist hemotoglist I went.  I have to go to see him every 3 months as my numbers are somewhat high.  I have a had bunch more tests and continue to have on this path.  Praying for all here that your numbers stay good and for energy that we all lack. 

Group FounderRosi
Rosi
Hello Forever Faithful, I have not been on this site for a while and just read your post. Thank you for your post and I am sorry to hear of what you're going through. This can be a daunting place to be, having all these tests and not knowing what they mean or why we feel the way we do. My type of MGUS was more of the IgM lambda type A year ago September I went to Stanford University clinic to see a specialist and was diagnosed with WM. Before that, I had heavy exhaustion and other things happen for about two years. I was 'watch and wait' evidently. Before that, I had chronic fatigue and other symptoms for twelve years. If people say that MGUS, doesn't have symptoms, well, I disagree with that. Are you working with a MM specialist? Have you gotten a second opinion from a hemotologist if you don't mind my asking. That was what I was advised to do and I"m very glad I did. My treatment is going well and I"m feeling better. I might mention that I received a lot of help and information from going onto a Face Book group called, MGUS. There are a few I'm pretty sure. As you can see, this site doesn't get hardly any replies and the Face Book groups do. You can read about many peoples' experiences. I don't know if you go on FB or not. Either way, hang in there the best you can and feel free to post here again if you can. I'd like to hear how you're doing. I will send my prayers for you as well that you are guided and helped through your days and with what's going on with you.