Do many here have neurological symptoms that aren't treatment related? I'm referring to the disease itself, not the treatment, or skeletal effects. Tremors, blurred vision, ringing in the ears, episodes of weakness followed by stiffening muscles, paresthesias, muscle spasms, that sort of thing.
And if so, do they seem to accumulate slowly over time, or do they come in "bursts" then slowly fade over time, but maybe resurface again later on?
This is my main question about these paraproteinemias that cause neuropathies and Dr. Google isn't yielding much information for me. Can they be exacerbated by illness, heat or fatigue in multiple myeloma patients with paraproteins affecting the nervous system?
Forums
Re: Question about neurological and other symptoms
jumpinjimmy,
Yes I have neurological symptoms and just have mgus. I am not on any treatments. My six year online medical degree .lol Has not provided me any explanation either. However you might get checked for amyloidosis or POEMS Syndrome (osteoclerotic myeloma). Good luck to you.
Yes I have neurological symptoms and just have mgus. I am not on any treatments. My six year online medical degree .lol Has not provided me any explanation either. However you might get checked for amyloidosis or POEMS Syndrome (osteoclerotic myeloma). Good luck to you.
Re: Question about neurological and other symptoms
I love your user name. Very clever. LOL
Whatever it is, I hope it's treatable. Do your neuro symptoms wax and wane? Do they get worse with infectious illness, or new ones come on with an illness, and then get better or go away months later? Mine acts a lot like MS, but all of the tests for that are negative or show mild changes.
I wish there were more people out there with this experience that could share their journey. Maybe it's not such a good thing that there aren't very many. It kind of worries me.
Whatever it is, I hope it's treatable. Do your neuro symptoms wax and wane? Do they get worse with infectious illness, or new ones come on with an illness, and then get better or go away months later? Mine acts a lot like MS, but all of the tests for that are negative or show mild changes.
I wish there were more people out there with this experience that could share their journey. Maybe it's not such a good thing that there aren't very many. It kind of worries me.
Re: Question about neurological and other symptoms
Hi JumpinJimmy,
I have experienced random muscle twitching. In fact, about three years before my diagnosis, I went to a neurologist and had him run several tests (during one test he stuck a needle into my muscles to check their reaction) because the twitching was seriously worrying me. My mother had died of ALS a few years before, and so anything involving the muscles made me a bit edgy. However, he determined that it was just normal for me, and nothing more was done. Unfortunately, he did not do a blood test. I would so love to have those results today! My muscle twitching stopped completely during the 2 1/2 years of my treatment and transplants, and has only recently begun to resurface now that I am in remission. Very strange, I think.... I would love to know if others have experienced this or whether it's in any way related to early myeloma/mgus, etc....
So, thanks for sharing and bringing this up! Blessings, Dana
I have experienced random muscle twitching. In fact, about three years before my diagnosis, I went to a neurologist and had him run several tests (during one test he stuck a needle into my muscles to check their reaction) because the twitching was seriously worrying me. My mother had died of ALS a few years before, and so anything involving the muscles made me a bit edgy. However, he determined that it was just normal for me, and nothing more was done. Unfortunately, he did not do a blood test. I would so love to have those results today! My muscle twitching stopped completely during the 2 1/2 years of my treatment and transplants, and has only recently begun to resurface now that I am in remission. Very strange, I think.... I would love to know if others have experienced this or whether it's in any way related to early myeloma/mgus, etc....
So, thanks for sharing and bringing this up! Blessings, Dana
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dheidel@hughes.net
Re: Question about neurological and other symptoms
Hi,
I,m in the midst of a 2 year Australian trial of Revlimid and have been battling muscle spasms and other issues for may months now. A lot of medical head scratching has taken place about the back, rib and abdomen cramps that last 20 odd seconds then cease.
They can't tell me much or put it down to one particular bug.
Pain management injections have occurred but that money pit has dried up for the particular medico, I,ll ride it out till the Revlimid trial concludes.
Morphine and rest help, endone is good too.
Eyesight fluctuates from good to poor, bone pain in arms and hands is not so good, that's a new occurrence and heat helps.
Finger tingles, insomnia, headaches, neck pain are all part of the daily routine and the anxiety of an unknown return to work date is the real kicker.
No more 9 to 5 for me I think.......an hour or 2 would be great but impossible at the moment....to unpredictable for the boss,
I,m in the midst of a 2 year Australian trial of Revlimid and have been battling muscle spasms and other issues for may months now. A lot of medical head scratching has taken place about the back, rib and abdomen cramps that last 20 odd seconds then cease.
They can't tell me much or put it down to one particular bug.
Pain management injections have occurred but that money pit has dried up for the particular medico, I,ll ride it out till the Revlimid trial concludes.
Morphine and rest help, endone is good too.
Eyesight fluctuates from good to poor, bone pain in arms and hands is not so good, that's a new occurrence and heat helps.
Finger tingles, insomnia, headaches, neck pain are all part of the daily routine and the anxiety of an unknown return to work date is the real kicker.
No more 9 to 5 for me I think.......an hour or 2 would be great but impossible at the moment....to unpredictable for the boss,
-
Alex
Re: Question about neurological and other symptoms
I hate to be a " negative Nancy", but I have been in remission for over 6 years since having two stem cells transplants. I still have a lot of neuropathy in my hands, feet and legs (numbness sometimes traveling up almost to my knees), but I also experience a lot of muscle spasms ("charley horses" in tops and bottom of my feet, side of back, calves and thighs). I also still experience muscle aches and stiffness, especially when I'm extra tired. I was 49 when diagnosed and now I'm 56-1/2, so I wonder if this is just what happens when getting older, or if it is a result of the disease or treatment. I hate to mention to family or get down about it, since I am so blessed to be in remission, but it does impact my activities at times. I have a long rod down my thigh bone due to a broken thigh bone from a lesion and had lesions elsewhere, so I don't know if that could be part of the cause or not. And of course, when I had my SCT, the chemo regimen was a bit more severe (thalidomide, lots of dex, etc) than the improved medications.
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lyndaclark - Who do you know with myeloma?: Self
- When were you/they diagnosed?: August 2005
- Age at diagnosis: 49
Re: Question about neurological and other symptoms
Hi jumpinjiminy,
I have MGUS and have ebb and flow symptoms similar to MS, also. A year ago, I had horrible pins and needles, numbness, and pain in my feet. Little lightening bolts in my fingers. That lasted a couple of months then went away. I have horrible blurry vision (off and on) in one eye for which no one has an explanation. I have developed ringing in my ears, and had a debilitating bout of vertigo in July. These last two symptoms sent me to a otolaryngologist at a major teaching hospital...he has scheduled me for an MRI of my head. I've discussed all these with my hema/oncologist, but he just kind of dismisses them.
I feel great most of the time, and try not to dwell on these little annoyances.
I have MGUS and have ebb and flow symptoms similar to MS, also. A year ago, I had horrible pins and needles, numbness, and pain in my feet. Little lightening bolts in my fingers. That lasted a couple of months then went away. I have horrible blurry vision (off and on) in one eye for which no one has an explanation. I have developed ringing in my ears, and had a debilitating bout of vertigo in July. These last two symptoms sent me to a otolaryngologist at a major teaching hospital...he has scheduled me for an MRI of my head. I've discussed all these with my hema/oncologist, but he just kind of dismisses them.
I feel great most of the time, and try not to dwell on these little annoyances.
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PaulaYvonne - Age at diagnosis: 56
Re: Question about neurological and other symptoms
Nice to see some MGUS people dealing with the same. I'm feeling more encouraged now. Thanks for chiming in.
Re: Question about neurological and other symptoms
Hi,
I have MGUS and I also have MS. The MS came first about 25 years ago but it took 12 years to get diagnosed - that's another story. And the MGUS was diagnosed about 8 years ago.
I do have a number of the odd neuro symptoms like pin pricks, bugs crawling on me, transient numbness, shooting pains, incredible foot and leg cramps/spasms,etc. I also had very frequent migraines for the first 20 years. In 2007, a neurologist I was seeing had me start taking CoQ10, Riboflavin, and a combo pill of potassium aspartate & magnesium aspartate. Not only did this combination decrease my migraines significantly but it took care of the majority of the muscle spasms.
Because of the MS, I can't pin any of my odd neuro symptoms on MGUS for sure; but I do feel at times that there is some increase in the symptoms. It can be annoying. The other annoying symptom I have is overheating at times and this can last for hours.
Kay
I have MGUS and I also have MS. The MS came first about 25 years ago but it took 12 years to get diagnosed - that's another story. And the MGUS was diagnosed about 8 years ago.
I do have a number of the odd neuro symptoms like pin pricks, bugs crawling on me, transient numbness, shooting pains, incredible foot and leg cramps/spasms,etc. I also had very frequent migraines for the first 20 years. In 2007, a neurologist I was seeing had me start taking CoQ10, Riboflavin, and a combo pill of potassium aspartate & magnesium aspartate. Not only did this combination decrease my migraines significantly but it took care of the majority of the muscle spasms.
Because of the MS, I can't pin any of my odd neuro symptoms on MGUS for sure; but I do feel at times that there is some increase in the symptoms. It can be annoying. The other annoying symptom I have is overheating at times and this can last for hours.
Kay
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Kay - Name: Kay Wilson
- Who do you know with myeloma?: SMM
- When were you/they diagnosed?: 2014
- Age at diagnosis: 72
Re: Question about neurological and other symptoms
lyndaclark wrote:
> I hate to be a " negative Nancy", but I have been in remission
> for over 6 years since having two stem cells transplants. I still have a
> lot of neuropathy in my hands, feet and legs (numbness sometimes traveling
> up almost to my knees), but I also experience a lot of muscle spasms
> ("charley horses" in tops and bottom of my feet, side of back,
> calves and thighs). I also still experience muscle aches and stiffness,
> especially when I'm extra tired. I was 49 when diagnosed and now I'm
> 56-1/2, so I wonder if this is just what happens when getting older, or if
> it is a result of the disease or treatment. I hate to mention to family or
> get down about it, since I am so blessed to be in remission, but it does
> impact my activities at times. I have a long rod down my thigh bone due to
> a broken thigh bone from a lesion and had lesions elsewhere, so I don't
> know if that could be part of the cause or not. And of course, when I had
> my SCT, the chemo regimen was a bit more severe (thalidomide, lots of dex,
> etc) than the improved medications.
Lynda, I had Grade 4 periphaeral neuropathy and like you i still have cramping in my feet and legs. I take hydromorphone for the pain. But the thing that has helped me the most is exercise. I went to a physical therapist and she started me on a regimen of exercises, mainly leg and feet exercises, but also some upper body exercises. I can't believe how much better I can walk stand balance etc. I highly recommend exercise for you, with the assistance of a PT. Best Regards, George
> I hate to be a " negative Nancy", but I have been in remission
> for over 6 years since having two stem cells transplants. I still have a
> lot of neuropathy in my hands, feet and legs (numbness sometimes traveling
> up almost to my knees), but I also experience a lot of muscle spasms
> ("charley horses" in tops and bottom of my feet, side of back,
> calves and thighs). I also still experience muscle aches and stiffness,
> especially when I'm extra tired. I was 49 when diagnosed and now I'm
> 56-1/2, so I wonder if this is just what happens when getting older, or if
> it is a result of the disease or treatment. I hate to mention to family or
> get down about it, since I am so blessed to be in remission, but it does
> impact my activities at times. I have a long rod down my thigh bone due to
> a broken thigh bone from a lesion and had lesions elsewhere, so I don't
> know if that could be part of the cause or not. And of course, when I had
> my SCT, the chemo regimen was a bit more severe (thalidomide, lots of dex,
> etc) than the improved medications.
Lynda, I had Grade 4 periphaeral neuropathy and like you i still have cramping in my feet and legs. I take hydromorphone for the pain. But the thing that has helped me the most is exercise. I went to a physical therapist and she started me on a regimen of exercises, mainly leg and feet exercises, but also some upper body exercises. I can't believe how much better I can walk stand balance etc. I highly recommend exercise for you, with the assistance of a PT. Best Regards, George
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GeorgeLJurak - Name: George Jurak
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Jan. 2011
- Age at diagnosis: 59
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