Hi all! I was diagnosed with MGUS a couple of days ago and this has been a journey. After battling the flu and pneumonia in January I started feeling weakness in my arms. Beginning of February it got to where I could barely lift anything so I was admitted as they originally thought it was Guillain Barre Syndrome, which waa rules out. After I was discharged the weakness started in both legs and feet, which the jury is still out on. But know with the new diagnosis of MGUS is seems it's peripheral neuropathy, even tho my hematologist says it causes no symptoms, Ha! I go for another EMG Monday and bone marrow biopsy is scheduled for the end of this month. I have some good days where I have little to no pain and tingling but lately its been a lot of bad days. The weakness, heaviness and nerve pain gets to me because I'm not me anymore. I've been out on leave for almost 2 months now and some days I can barely get out the bed. I've read other people having these same symptoms so I am not alone. Just wish I had some relief from this and some understanding of why this reared its head all of a sudden.
+ heavy fatigue and neuropathy. About ten months ago, I created a group on DS for MGUS just for the heck of it. I was diagnosed with it in 2005. At that time, I had a CT scan and they didn't find anything. I actually ignored it for ten years and was being treated for CFS and Lyme during that time.
Have you visited the MGUS site? I pretty much wrote an explanation about it last week. It might be helpful for you to read that. It is good you're getting the BMB at the end of the month. That's an important test in monitoring this disease. I might add, it's a rare illness. Its very important to find a specialist who knows what it is and has had experience working with it.Why it has reared it's ugly head now? That's a good question and I have asked that many times. Which came first? The CFS or the MGUS, or in my case the Lyme? I don't think many doctors know. However, they are doing a lot of research on it and find it can also go along with another illness. For whatever help that may be. Hang in there. And my best wishes for this upcoming month.