Hi everyone,
I have also been diagnosed with MGUS, kappa free light chains, IgG.
I have also suffered from severe leg weakness for 18 months. I also have debilitating fatigue, tingling, burning and shooting pain and multiple skin rashes plus bouts of severe nerve pain in the face, similar to a migraine. At first my doctors said I had GBS [Guillain–Barré syndrome], then small fiber neuropathy, then CIDP [chronic inflammatory demyelinating polyneuropathy], and now they are not really sure.
I have only slowed F waves on my nerve conduction study + some slowing in the sural nerve.
I am on Lyrica (pregabalin) and low dose amitriptyline (Elavil), which helps with the pain.
I find I can't walk very far and I can't work or look after my family without assistance. I had an amazing life & I really want it back.
I'm travelling to the Mayo Clinic in three months and I'm praying that I get some answers and treatment then.
I never imagined that I would get an illness like this.
Forums
Re: MGUS and weakness in legs
Dear Danni,
A Mayo Clinic evaluation is great. I would make sure you see a neurologist and one of the myeloma specialists while you are there. Possibile diagnostic considerations: amyloidosis, POEMS syndrome, MAG neuropathy (if the MGUS is an IgM MGUS), MGUS neuropathy (a more nebulous condition that behaves much like CIDP and typically is treated as such).
Good luck and let us know how it goes!
Pete V.
A Mayo Clinic evaluation is great. I would make sure you see a neurologist and one of the myeloma specialists while you are there. Possibile diagnostic considerations: amyloidosis, POEMS syndrome, MAG neuropathy (if the MGUS is an IgM MGUS), MGUS neuropathy (a more nebulous condition that behaves much like CIDP and typically is treated as such).
Good luck and let us know how it goes!
Pete V.
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Dr. Peter Voorhees - Name: Peter Voorhees, M.D.
Beacon Medical Advisor
Re: MGUS and weakness in legs
I have an enlarged tongue which first started my hunt for answers 1 year ago July. I also have a weakness in my legs and arms, even though I exercise, I do not seem to be getting any stronger.
Had EMG and all other tests and all came back negative. I was diagnosed with smoldering myeloma 6 weeks ago at the Mayo Clinic.
If I walk or stand too long, clean floors, or bend my lower back, it gets a weird kind of achy only in the back pelvis area. The x-rays all came back with no lesions.
But the leg weakness is real and scary.
Had EMG and all other tests and all came back negative. I was diagnosed with smoldering myeloma 6 weeks ago at the Mayo Clinic.
If I walk or stand too long, clean floors, or bend my lower back, it gets a weird kind of achy only in the back pelvis area. The x-rays all came back with no lesions.
But the leg weakness is real and scary.
Re: MGUS and weakness in legs
Hi Barb 53, You have probably already had this investigated at the Mayo Clinic, but an enlarged tongue can be a symptom of amyloidosis, which is another condition sometimes treated in the same way as myeloma. The Mayo clinic website has a section on amyloidosis, actually.
The support group I am in also has an interest in amyloidosis patients, if they are interested in joining. Hope that helps and that you don't actually have amyloid deposits in your tissues though!
The support group I am in also has an interest in amyloidosis patients, if they are interested in joining. Hope that helps and that you don't actually have amyloid deposits in your tissues though!
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: MGUS and weakness in legs
I've had the same with MGUS and MD says to see a neurologist as he says it's not related to MGUS. My problem lasts about 15 seconds at time. I can't can't feel my feet starting from above the ankles therefore I'm unsure what position they're in as well. I definetly feel like I'm going to fall First time was a year ago then 4 months ago and now 3 weeks ago ! Seems enough people are reporting the same problem so I hope a study is in the making !!
Re: MGUS and weakness in legs
I was diagnosed with MGUS in December 2013 -- this after a journey to find out the cause of terrible leg pain and numbness in both feet when walking. Since I had a spinal stenosis secondary to bulging disc in 2007 (surgery was successful), I suspected a repeat performance at another site. Sure enough, MRI picked up another stenosis site, this time at L3-4. Just finished surgery to fix the stenosis issue and all pain is gone in legs and feet.
Now I have balance issues, which could be MGUS or, as my neurologist put it, AGE.
In the process of determining the leg pain etc, MGUS was diagnosed from blood tests, confirmed by bone marrow test.
Am now on an annual wait and see monitor.
Now I have balance issues, which could be MGUS or, as my neurologist put it, AGE.
In the process of determining the leg pain etc, MGUS was diagnosed from blood tests, confirmed by bone marrow test.
Am now on an annual wait and see monitor.
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w21066 - Name: Wayne F
- When were you/they diagnosed?: MGUS 2013
- Age at diagnosis: 77
Re: MGUS and weakness in legs
Glad you found us Wayne. It does seem like there's a lot of foot / leg neuropathy and pain among us MGUSers. I think there may be some studies which suggest there is a link, but no determination yet if MGUS is the cause.
My neuropathy / pain is related to degenerative disc, nerve root compression and fibromyalgia. I take gabapentin for it and it helps, but I've also found a lot of help from extremely gentle stretching exercises prescribed by a physical therapist. If I stay in one position too long, it makes it worse.
Anyway, Wayne, I wanted to welcome you and hope you are able to find the cause of your imbalance issues.
My neuropathy / pain is related to degenerative disc, nerve root compression and fibromyalgia. I take gabapentin for it and it helps, but I've also found a lot of help from extremely gentle stretching exercises prescribed by a physical therapist. If I stay in one position too long, it makes it worse.
Anyway, Wayne, I wanted to welcome you and hope you are able to find the cause of your imbalance issues.
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Toni - Name: Toni
- Who do you know with myeloma?: self - MGUS
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 51
Re: MGUS and weakness in legs
Can someone please help what is causing leg weakness? I have been found vitamin D deficient. This has been going on for than a year. D3 has been prescribed. D3 is helping, but I do not feel fresh anymore, and I still feel tired going up on a non-running escalator in offices or on stairs.
I realized that it all started with me sitting long hours on a chair that probably is due to its design (slightly lifted upward towards the knee area) blocked blood circulation. So I changed my chair. It definitely helped, but still nothing as good as I used to feel.
By chance, I started taking one bottle of Gatorade every day, this has helped much more than any vitamin or any other change in habits.
But I am not sure this recovery is permanent or not.
Do I need to see some specialist?
I realized that it all started with me sitting long hours on a chair that probably is due to its design (slightly lifted upward towards the knee area) blocked blood circulation. So I changed my chair. It definitely helped, but still nothing as good as I used to feel.
By chance, I started taking one bottle of Gatorade every day, this has helped much more than any vitamin or any other change in habits.
But I am not sure this recovery is permanent or not.
Do I need to see some specialist?
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rmanzar
Re: MGUS and weakness in legs
[quote="Dianem"]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[/quote]
Hi Diane, I have IgG lambda - I apologise for my delay in responding to you and hope all is going well for you.
Hi Diane, I have IgG lambda - I apologise for my delay in responding to you and hope all is going well for you.
Re: MGUS and weakness in legs
Hi Denise.
I happen to come across your post. I am a newbie here. I was just diagnosed with MGUS about 3 weeks ago. One of the reasons I started seeing my neurologist was balance/coordination issues. I also let her know of my leg/back pain issues. I initially started seeing her in August. She ran blood/urine tests then. I asked her if she was checking for anything in particular. she said bone cancer (multiple myeloma). I really didn't believe her.
I went back last month (October) for her to rerun the blood/urine tests, and that's when I got an email from her showing my test results saying she is referring me to a oncologist and my diagnosis is MGUS. I was shocked to say the least.
Anyway, I have had the same problem of leg weakness and back / leg pain for a while now. To see thread lets me know I'm not just making it all up in my mind.
Hope you didn't mind the long post. Have a good week and good Thanksgiving.
Chris
I happen to come across your post. I am a newbie here. I was just diagnosed with MGUS about 3 weeks ago. One of the reasons I started seeing my neurologist was balance/coordination issues. I also let her know of my leg/back pain issues. I initially started seeing her in August. She ran blood/urine tests then. I asked her if she was checking for anything in particular. she said bone cancer (multiple myeloma). I really didn't believe her.
I went back last month (October) for her to rerun the blood/urine tests, and that's when I got an email from her showing my test results saying she is referring me to a oncologist and my diagnosis is MGUS. I was shocked to say the least.
Anyway, I have had the same problem of leg weakness and back / leg pain for a while now. To see thread lets me know I'm not just making it all up in my mind.
Hope you didn't mind the long post. Have a good week and good Thanksgiving.
Chris
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chrismcd99 - Name: chrismcd99
- Who do you know with myeloma?: myself
- Age at diagnosis: 57
23 posts
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