Hi,
I have been dealing with constant 24/7 muscle twitching in my calves for the past 2 years. I have done tests to rule out multiple sclerosis (MS) and amyotrophic lateral sclerosis (ALS), and neurologists calls it "benign fasciculation syndrome."
The twitchings started the same time (approximately) as the MGUS, so I can't help but thinking there is a relation between the 2?
I am IgA kappa, 0.6 g/dL
Christophe
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Re: Is muscle twitching a symptom of MGUS / multiple myeloma
Not entirely sure of a link, but I have a diagnosis of benign fasciculation syndrome and am under evaluation for AL amyloidosis (not diagnosed yet and hopefully won't be).
Re: Is muscle twitching a symptom of MGUS / multiple myeloma
Interesting. I did a fat pat biopsy one year ago that was negative. Good luck.
Re: Is muscle twitching a symptom of MGUS / multiple myeloma
Hi Christophe,
I find your post interesting. I was diagnosed with MGUS in August and I have muscle twitching all over too. I also get tingling in my shins and I've also experienced some leg weakness.
I'm trying to figure out if my neuropathy symptoms are related to a nerve disorder brought on by MGUS, or if it's something separate. There is also a possible genetic link in my family because my brother and sister have some similar symptoms (although my brother is diabetic).
My doctors thus far do not think that it is ALS, and I'm hoping their assessment stays that way. It's definitely a grind trying to figure this out. I'm not sure if I should continue to research or just try to forget about it in between trips to the doctor.
I'm IgG with an M-spike of 1.5 g/dL (15 g/l). No CRAB features, and I've had a full body x ray and MRIs where no lesions were recognized.
Good luck to you.
Jon
I find your post interesting. I was diagnosed with MGUS in August and I have muscle twitching all over too. I also get tingling in my shins and I've also experienced some leg weakness.
I'm trying to figure out if my neuropathy symptoms are related to a nerve disorder brought on by MGUS, or if it's something separate. There is also a possible genetic link in my family because my brother and sister have some similar symptoms (although my brother is diabetic).
My doctors thus far do not think that it is ALS, and I'm hoping their assessment stays that way. It's definitely a grind trying to figure this out. I'm not sure if I should continue to research or just try to forget about it in between trips to the doctor.
I'm IgG with an M-spike of 1.5 g/dL (15 g/l). No CRAB features, and I've had a full body x ray and MRIs where no lesions were recognized.
Good luck to you.
Jon
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ricejon - Name: Jon
- Who do you know with myeloma?: mgus (self)
- When were you/they diagnosed?: 2016
- Age at diagnosis: 47
Re: Is muscle twitching a symptom of MGUS / multiple myeloma
I strongly encourage anyone experiencing muscle twitching and vibration to be evaluated for Lyme disease.
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countrygirl - Name: Countrygirl
- Who do you know with myeloma?: IgG MGUS
- When were you/they diagnosed?: September 2016
- Age at diagnosis: 35
Re: Is muscle twitching a symptom of MGUS / multiple myeloma
Thank you very much, country girl, for taking the time to respond.
I checked out the symptoms of Lyme disease, and the twitching is really the only thing that I present with.
God Bless,
Jon
I checked out the symptoms of Lyme disease, and the twitching is really the only thing that I present with.
God Bless,
Jon
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ricejon - Name: Jon
- Who do you know with myeloma?: mgus (self)
- When were you/they diagnosed?: 2016
- Age at diagnosis: 47
Re: Is muscle twitching a symptom of MGUS / multiple myeloma
I am also concerned about amyloidosis because in addition to the twitchings, I have non-sustained episodes of ventricular tachycardia (captured on a cardiac event monitor). There may be a genetic factor since my dad has cardiomyopathy (although no one else in the family has cardiac issues).
Tests seem to rule out amyloidosis so far: normal kappa / lambda ratio, fat pad biopsy negative, no Bence Jones protein, cardiac echo / MRI normal (though left ejection fraction is a bit below on the MRI) . I haven't done a nerve biopsy yet.
Regarding ALS, my understanding is that significant weakness is the primary symptom, not twitching. EMG was clean. Neurologists noticed a slight loss of vibration on lower limbs, but no clinical weakness. Hence the "benign fasciculation syndrome".
Tests seem to rule out amyloidosis so far: normal kappa / lambda ratio, fat pad biopsy negative, no Bence Jones protein, cardiac echo / MRI normal (though left ejection fraction is a bit below on the MRI) . I haven't done a nerve biopsy yet.
Regarding ALS, my understanding is that significant weakness is the primary symptom, not twitching. EMG was clean. Neurologists noticed a slight loss of vibration on lower limbs, but no clinical weakness. Hence the "benign fasciculation syndrome".
Re: Is muscle twitching a symptom of MGUS / multiple myeloma
I was diagnosed with MGUS a little over a year ago and have nerve pain in my feet and legs and also constant muscle twitching. My doctor tested me for everything he could think of and all tests came back negative. He doesn’t think these nerve and muscle problems are related, but from what I’ve been reading, it has to be.
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MargieS
Re: Is muscle twitching a symptom of MGUS / multiple myeloma
To all;
Very interesting thread. I too have constant muscle twitching. I didn't notice it until after my stem cell transplants. I also have neuropathy (mainly numbness but also pain) and orthostatic hypotension. I have been as thoroughly tested as I can for anything we can think of. That includes Lyme, ANA, thyroid, vitamin B, etc. As others mentioned, my brother and dad have peripheral neuropathy of various degrees.
I tried to have a nerve biopsy of a nerve in my calf, but the surgeon cut me up good and didn't come away with the nerve. I knew better to go to that hospital.
Eventually my neurologist concluded after her nerve conduction studies that I likely had some genetic component as well as a neurotoxicity from all my serious chemo for myeloma. She determined my sensory nerves were more damaged then my motor nerves. While I basically figured that out awhile ago, my main objective was to pinpoint the real cause, because my oncologist would like me to be on a maintenance regimen which I can't bring myself to do due to possible nerve destruction. I'd like to quantify my nerve situation prior to taking any future neurotoxins
In the end I am playing with leaky gut, diet, and autoimmune components. Its worth a try anyway. I am also rigging up a homemade ECG monitor to try to quantify severity, intensity, and frequency of twitches. I don't expect much success.
I can't correlate the calf twitches to any activity. Although last summer I went to Cedar Point amusement park and rode the hairiest roller coasters. I fought the rides the entire time. When I got off some, I noticed my forearms were twitching. I haven't the slightest idea if any of this means anything. But I keep trying. The engineer in me wont let me quit
Very interesting thread. I too have constant muscle twitching. I didn't notice it until after my stem cell transplants. I also have neuropathy (mainly numbness but also pain) and orthostatic hypotension. I have been as thoroughly tested as I can for anything we can think of. That includes Lyme, ANA, thyroid, vitamin B, etc. As others mentioned, my brother and dad have peripheral neuropathy of various degrees.
I tried to have a nerve biopsy of a nerve in my calf, but the surgeon cut me up good and didn't come away with the nerve. I knew better to go to that hospital.
Eventually my neurologist concluded after her nerve conduction studies that I likely had some genetic component as well as a neurotoxicity from all my serious chemo for myeloma. She determined my sensory nerves were more damaged then my motor nerves. While I basically figured that out awhile ago, my main objective was to pinpoint the real cause, because my oncologist would like me to be on a maintenance regimen which I can't bring myself to do due to possible nerve destruction. I'd like to quantify my nerve situation prior to taking any future neurotoxins
In the end I am playing with leaky gut, diet, and autoimmune components. Its worth a try anyway. I am also rigging up a homemade ECG monitor to try to quantify severity, intensity, and frequency of twitches. I don't expect much success.
I can't correlate the calf twitches to any activity. Although last summer I went to Cedar Point amusement park and rode the hairiest roller coasters. I fought the rides the entire time. When I got off some, I noticed my forearms were twitching. I haven't the slightest idea if any of this means anything. But I keep trying. The engineer in me wont let me quit
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blueblood - Name: Craig
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 54
Re: Is muscle twitching a symptom of MGUS / multiple myeloma
Hi Blueblood,
You wrote: "But I keep trying. The engineer in me wont let me quit"
Same here
I was also diagnosed with lambda light-chain MGUS and also suffer from mild neuropathy, including muscle twitching and sometimes heavy legs. My neuropathy decreased significantly after oral / sublingual intake of vitamin B12 (methylcobalamin) and a gluten-free diet (cf. my other posts on this forum).
As I wanted to avoid undertreatment of a potential B12 shortage, I visited a private B12 clinic last week. The hematologist (specializing in B12) told me that his experience teaches that of all people with a level around 300 pmol/l, around 20% is dealing with neurologic symptoms (i.e., look into this if you have a similar or lower level).
As my level was 325 pmol/l (before supplementing), the B12 clinic prescribed intramuscular injections twice a week, 1000 mcg hydroxocobalamin, for six weeks, and thereafter once a week. Just to be on the safe side. Overdosing B12 does not harm. He told me that IM injections are the only decent way to deal with a B12 shortage.
I will start next week and will keep you posted.
Very best regards from Amsterdam,
Ruben
You wrote: "But I keep trying. The engineer in me wont let me quit"
Same here
I was also diagnosed with lambda light-chain MGUS and also suffer from mild neuropathy, including muscle twitching and sometimes heavy legs. My neuropathy decreased significantly after oral / sublingual intake of vitamin B12 (methylcobalamin) and a gluten-free diet (cf. my other posts on this forum).
As I wanted to avoid undertreatment of a potential B12 shortage, I visited a private B12 clinic last week. The hematologist (specializing in B12) told me that his experience teaches that of all people with a level around 300 pmol/l, around 20% is dealing with neurologic symptoms (i.e., look into this if you have a similar or lower level).
As my level was 325 pmol/l (before supplementing), the B12 clinic prescribed intramuscular injections twice a week, 1000 mcg hydroxocobalamin, for six weeks, and thereafter once a week. Just to be on the safe side. Overdosing B12 does not harm. He told me that IM injections are the only decent way to deal with a B12 shortage.
I will start next week and will keep you posted.
Very best regards from Amsterdam,
Ruben
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Ruben_1980 - Name: Ruben_1980
- Who do you know with myeloma?: I have (lambda) Light Chain MGUS
- When were you/they diagnosed?: June 2017
- Age at diagnosis: 36
10 posts
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