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Questions and discussion about monoclonal gammopathy of undetermined significance (i.e., diagnosis, risk of progression, living with the disease, etc.)

Re: MGUS and weakness in legs

by Truthlover on Sun May 06, 2018 12:44 pm

Hi,

I'm Nina, 55. I was diagnosed with MGUS about four years ago. I also have the muscle weakness in the legs that you all have described. My balance is unsteady. I can only walk with a cane, but not more than a block or two without getting get terrible back and leg pain. I have arm weakness. I have been using a scooter. I also have fibromyalgia. I cannot work. My neurologist conducted EMG's, which showed damaged nerves. My oxygen stats go down to the low 80's. I do not know if this is associated with MGUS.

Truthlover

Re: MGUS and weakness in legs

by Multibilly on Mon May 07, 2018 9:03 am

Hi Nina,

I'm sorry to hear about your situation. This is not to say that some of your symptoms may not be due to MGUS, but one could associate all of your symptoms with fibromyalagia.

Do you know what your "M-spike" and serum free light chain numbers are from your serum protein electrophoresis and serum free light chain assay tests (including the units of measure and standard reference ranges)?

Also, if you want to try to determine if your back pain may be due to a monoclonal gammopathy instead of your fibromyalgia, you may want to discuss getting an MRI of your spine or a PET/CT scan. Either of those radiological scans should be able to pick up any bone damage specifically due to a monoclonal gammopathy.

In any case, your doctor is probably the best place to start in helping to determine if any of your symptoms may be due to, or exacerbated by, your MGUS.

Multibilly
Name: Multibilly
Who do you know with myeloma?: Me
When were you/they diagnosed?: Smoldering, Nov, 2012

Re: MGUS and weakness in legs

by ricejon on Mon May 07, 2018 4:41 pm

Hi Denise,

I have IgG MGUS. I wanted to let you know that I also experience weakness in my legs along with neuropathy. I get mild burning in my right foot, muscle twitching, pins and needles. I've also experi­enced muscle atrophy in my calves.

My myeloma specialist and my neurologist are not convinced that my peripheral neuropathy symp­toms are linked to MGUS. However, I read a lot online about others with MGUS who experi­ence similar symptoms as me.

They say the IgM subtype is associated with neuropathy more frequently than the others.

Good luck.
Jon

ricejon
Name: Jon
Who do you know with myeloma?: mgus (self)
When were you/they diagnosed?: 2016
Age at diagnosis: 47

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