I was diagnosed with MGUS in early 2010 and know that it is related to multiple myeloma and upon the research I have done online – multiple myeloma can cause muscle weakness.
I have a problem that I find very limiting and my oncologist is only interested in my blood counts and won’t answer this one very specific question for me.
Can MGUS cause muscle weakness in the legs? I can be walking along finely and then my legs go weak and I have trouble walking and I am scared I am going to fall over – it is so distressing and so embarrassing
A very simple question for an oncologist but I never get an answer – just yearly pathology requests when I see him once a year. Maybe if I had multiple myeloma my oncologist may
be more forthcoming with an answer to my question.
I haven’t got multiple myeloma at this point in time and I can only pray that my MGUS stays as it is and does not progress to multiple myeloma.
Would someone please answer this most pressing question for me please. At this point in time knowledge would help me deal with this quiet distressing weak leg syndrome – if it is part and parcel of MGUS it will put my mind at ease and if there is a medication that will assist this condition could you please advise me so that I may in turn tell my GP about it.
Trusting you can help me with this very pressing question because I do live alone and this weak legs syndrome is something I need to address urgently.
Thank you for your forum.
Sincerely,
Denise
Forums
Re: MGUS and weakness in legs
I was just diagnosed with MGUS and I have had the same symptoms. While walking one of my legs just collapsed and I fell to the ground. My legs also feel weeks. Not sure this has anything to do with MGUS but it is an interesting coincidence.
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Sunsetsal
Re: MGUS and weakness in legs
Thank you ever so much for allowing me to post my concerns on Myeloma Beacon and also for notifying me that 2 other people with MGUS appear to have leg weakness associated with it also.
You have to wonder why the oncologists cannot discuss this debilitating condition with their MGUS sufferers.
This leg weakness is very disturbing, distressing and can be downright embarrassing to the point where you don’t want to go out in public and feel humiliated because you get no warning before your legs actually let go on you.
When I go shopping I do a bee-line for a shopping trolley to steady myself if my legs feel they want to let go on me.
Are there any other people with MGUS who have this leg weakness, and can anyone provide any insight into whether it is directly related to MGUS?
Denise Humphries
You have to wonder why the oncologists cannot discuss this debilitating condition with their MGUS sufferers.
This leg weakness is very disturbing, distressing and can be downright embarrassing to the point where you don’t want to go out in public and feel humiliated because you get no warning before your legs actually let go on you.
When I go shopping I do a bee-line for a shopping trolley to steady myself if my legs feel they want to let go on me.
Are there any other people with MGUS who have this leg weakness, and can anyone provide any insight into whether it is directly related to MGUS?
Denise Humphries
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Denise Humphries
Re: MGUS and weakness in legs
Hi Denise - I think one type of MGUS can cause 'nerve' issues such as tingling or neuropathy. IgA MGUS may cause this type of problem. Is this the type you have? Diane
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Dianem
Re: MGUS and weakness in legs
Hi if it helps I had leg "weakness" before I was diagnosed with Myeloma. For at least a year, and it was similar to you describe, walking I felt like I was going to collapse all the time. I developed something called "foot drop" (dragging the foot when you walk) and weakness from my hip down in my right leg. The reflexes also changed, and I still have pathological reflexes in my foot ankle and knee.
I was seeing a neurologist at the time, and he was seeing the reflexes but could not find a cause so just shrugged it off.
I am not sure If I had MGUS or multiple myeloma, but I think we all start with MGUS?
another thing to check is if you are anemic. When I am anemic my legs feel very very weak.
I was seeing a neurologist at the time, and he was seeing the reflexes but could not find a cause so just shrugged it off.
I am not sure If I had MGUS or multiple myeloma, but I think we all start with MGUS?
another thing to check is if you are anemic. When I am anemic my legs feel very very weak.
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Anonymous
Re: MGUS and weakness in legs
I have MGUS/border smoldrring. and MGUS related neuropathy. I have weak legs, shooting leg and hip pain. Neurontin has helped imensley with shooting pain. I was diagnosed with multiple myeloma 6 wks ago then changed to smoldering. Now one doctor says smoldering the other MGUS. When I was told I had multiple myeloma, the doctor seemed to be concerned with it all. Now with MGUS, not so much. A neurologist may help. Take care:)
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dishevelled - Name: Heather Trimnell
- Who do you know with myeloma?: me
- When were you/they diagnosed?: 4/1/2011
- Age at diagnosis: 36
Re: MGUS and weakness in legs
MGUS can be associated with neuropathy, which can cause muscle weakness, although there are usually other sensory symptoms present as well (numbess, tingling, burning).
Amyloidosis can be associated with MGUS and cause neuropathy or muscle infiltration with associated weakness.
I also think about lower back problems -- spinal canal narrowing (stenosis) or nerve root impingement, either from arthritis, disc problems or plasmacytomas. Most patients have some degree of back pain in these instances, but not always.
I would have a low threshold to pursue a lower spine MRI if symptoms are getting worse. If the weakness is getting worse over time and/or is having a significant impact on your day-to-day life, it might be worth getting a referral to a neurologist to see if they can help determine a cause of the weakness.
Good luck!
Pete V.
Amyloidosis can be associated with MGUS and cause neuropathy or muscle infiltration with associated weakness.
I also think about lower back problems -- spinal canal narrowing (stenosis) or nerve root impingement, either from arthritis, disc problems or plasmacytomas. Most patients have some degree of back pain in these instances, but not always.
I would have a low threshold to pursue a lower spine MRI if symptoms are getting worse. If the weakness is getting worse over time and/or is having a significant impact on your day-to-day life, it might be worth getting a referral to a neurologist to see if they can help determine a cause of the weakness.
Good luck!
Pete V.
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Dr. Peter Voorhees - Name: Peter Voorhees, M.D.
Beacon Medical Advisor
Re: MGUS and weakness in legs
I was diagnosed with MGUS a year ago, IgG lambda type, and I went to another country to a spedcialist for hernias because my doctors couldnt know what is wrong with me. This specialist found ingvinal hernia for 1 minute and sport hernia on the other side of a groin.
I had problems with leg tiredness, weekness, groin pain and I started to limp. I had surgery 3 months ago and I am slowly recovering. Have to stretch every day bgecause my muscles are still week but I dont feel pain and limp anymore.
I had problems with leg tiredness, weekness, groin pain and I started to limp. I had surgery 3 months ago and I am slowly recovering. Have to stretch every day bgecause my muscles are still week but I dont feel pain and limp anymore.
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crogirl
Re: MGUS and weakness in legs
This is the very first symptom I had that something was wrong. I thought it was that I needed a knee replacement but over another week or so the pain went to the groin area & then down the front of my let like a shin spint. Then I got the leg weakness. I mentioned this to my kidney doctor ( I have moderate kidney disease) & he put 2 & 2 together & diagnosed with MGUS.
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barbara1200 - Name: barb
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2013
- Age at diagnosis: 75
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