Interesting to hear about the relation between IgM and neuropathy.
My wife has IgM myeloma, which is a rare case as I understand.
It was peripheral neuropathy (slight) and traveling joint pains (severe) that originally sent her to months of doctor visits and tests that eventually led to her diagnosis, which was originally thought to be Waldenstroms. No one has been able to determine the source of the joint pains, as they're not a common symptom of multiple myeloma.
Interestingly, the joint pains disappeared shortly after diagnosis. We're not sure if it was the acupuncture or the myeloma treatment that chased it away. Both were started in the same week, and the joint pain disappeared, never to return. It's like the pain was just there to guide her to the doctor, and then left.
Forums
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Jerry - Name: Jerry
- Who do you know with myeloma?: Wife
- When were you/they diagnosed?: 2013
- Age at diagnosis: 37
Re: Peripheral neuropathy and IgM MGUS
Hi Root 710 and others.
As with others, it started for me (male) thirteen years ago at age 50 with "tingling" in my feet and tremors in my arms; balance issues. Began to see various neurologists that were totally confused but ruled out all the bad diseases and conditions. "Wait and see" was the response but frankly some suggested I was "faking it" for drugs. I was horrified. Then again my "EMG" tests were positive for something very wrong.
I eventually was diagnosed with the IgM MAG antibody and MGUS about seven years ago. I was then treated with rituximab (Rituxan, Mabthera);, 28 treatments over a three year period with no effect. I learned later that recent studies then suggest that only 50% of patients responded to that treatment. Obviously I was not in the 50% group. At the same time, the rituximab had effects on my brain function and as a CPA affected my work performance. My legs and feet have gone to sleep and now my arms and hands are going that way next. It also affects my rectum and colon function. I do not need to say I have thought about wearing a diaper but currently not there yet. Difficulty in climbing stairs has increased.
I asked one of my neurologist (I am now on number nine; they "come and go" not always my choice) about climbing stairs and he said "don't". What he was trying to say was to minimize that activity by consolidating trips, taking the elevator, etc. The pain on the bottom of my feet is significant. Some have asked how do I stand the pain in just walking? My answer is what am I supposed to do, cut off my legs? No, it is my "new norm".
Have tried gabapentin for the pain, but has little, if any effect. Taking three pills a day is difficult to remember and there are side effects.
Writing is becoming difficult. Good thing we have the computer.
Balance issues are a totally annoyance, but then again I almost drowned a couple of times in pools at motels due balance issues. Did not know where I was in only three feet of water! I avoid water and I am a good swimmer. Driving is ok but then again I do not always feel the pedal. So I use other senses to guide me.
In general, the progression of the disease is very slow but methodical.
My suggestion? Gym, gym, gym, gym. It has saved me. Apart from the obvious health aspects and the yearly $150 reimbursement I get from my insurance provider, it has allowed my legs and arm to remain strong. Actually what I think happens is that the the brain to muscle pathways have been re-routed via other more functioning nerve fibers. I do all aspects of exercise twice a week, strength and aerobics. I cannot run because of the balancing but maybe biking will work.
Recently I had some pulmonary tests that included a unique bike exercise test of my breathing. Not sure it is unrelated to my neuropathy but more likely the cardiac issues I am having. The results were that I performed at 134% of what a person of my age should be able to do, let alone the neuropathy!
I still have significant neuropathy and it is getting worse so "I adapt". There is no treatment, I know. This condition is "rare" I hear which is actually a curse.
So, I say hang in there and innovate but above all watch out four yourself, even with the doctorss.
Maine Genie
As with others, it started for me (male) thirteen years ago at age 50 with "tingling" in my feet and tremors in my arms; balance issues. Began to see various neurologists that were totally confused but ruled out all the bad diseases and conditions. "Wait and see" was the response but frankly some suggested I was "faking it" for drugs. I was horrified. Then again my "EMG" tests were positive for something very wrong.
I eventually was diagnosed with the IgM MAG antibody and MGUS about seven years ago. I was then treated with rituximab (Rituxan, Mabthera);, 28 treatments over a three year period with no effect. I learned later that recent studies then suggest that only 50% of patients responded to that treatment. Obviously I was not in the 50% group. At the same time, the rituximab had effects on my brain function and as a CPA affected my work performance. My legs and feet have gone to sleep and now my arms and hands are going that way next. It also affects my rectum and colon function. I do not need to say I have thought about wearing a diaper but currently not there yet. Difficulty in climbing stairs has increased.
I asked one of my neurologist (I am now on number nine; they "come and go" not always my choice) about climbing stairs and he said "don't". What he was trying to say was to minimize that activity by consolidating trips, taking the elevator, etc. The pain on the bottom of my feet is significant. Some have asked how do I stand the pain in just walking? My answer is what am I supposed to do, cut off my legs? No, it is my "new norm".
Have tried gabapentin for the pain, but has little, if any effect. Taking three pills a day is difficult to remember and there are side effects.
Writing is becoming difficult. Good thing we have the computer.
Balance issues are a totally annoyance, but then again I almost drowned a couple of times in pools at motels due balance issues. Did not know where I was in only three feet of water! I avoid water and I am a good swimmer. Driving is ok but then again I do not always feel the pedal. So I use other senses to guide me.
In general, the progression of the disease is very slow but methodical.
My suggestion? Gym, gym, gym, gym. It has saved me. Apart from the obvious health aspects and the yearly $150 reimbursement I get from my insurance provider, it has allowed my legs and arm to remain strong. Actually what I think happens is that the the brain to muscle pathways have been re-routed via other more functioning nerve fibers. I do all aspects of exercise twice a week, strength and aerobics. I cannot run because of the balancing but maybe biking will work.
Recently I had some pulmonary tests that included a unique bike exercise test of my breathing. Not sure it is unrelated to my neuropathy but more likely the cardiac issues I am having. The results were that I performed at 134% of what a person of my age should be able to do, let alone the neuropathy!
I still have significant neuropathy and it is getting worse so "I adapt". There is no treatment, I know. This condition is "rare" I hear which is actually a curse.
So, I say hang in there and innovate but above all watch out four yourself, even with the doctorss.
Maine Genie
-
Maine Genie
Re: Peripheral neuropathy and IgM MGUS
I have this type of IgM MGUS going on two years. Will never forget when the neurologist told me I have a nasty protein in my blood and sent me to my hematologist. I had one already as have had blood issues along the way. He was going to start the Rubimax infusions and I said to wait.
At that time I walked like a drunk, completely a mess. Could not speak right, think right, grab words, had tremors, my little fingers did whatever they wished to do. Was completely off balance. The doctor prescribed me a walker with a seat to keep me from hurting myself as I had had multiple falls.
I was scared! Never heard of this before this M protein. Then started researching it. Great, got the worse one. They even did the special test for Waldenstrom's. Now that has an expiration date with it. Then the why and how did I get this phase, finally decided to worry one day a week as that was not helping me at all.
I don't use the walker any more and my balance is better. Still have my relapses that are no where near what I was. I manage my stress, which is easier said than done. I go to my appointments. Found my nerves and muscles are dying and will get worse with the M protein going up, says my neurologist. I have it in my feet, hands, calves, back, and hip. it is encroaching it's way up my body, but that is what I can expect.
I miss my life. I read about the person who exercises and all; that does not work with me. One work out and I am in pain and down for 3 days. Just riding in the vehicle more than fifteen miles hurts me for days after. I don't know if others feel this same way or not. With my other issues it is hard to distinguish the difference between what is from this and what is from that or the other thing.
That is my story. I do joke around that is my salvation and how I cope even gallow humor which some people don't get? But I find it funny! I do miss my life and I do miss me. I just need to accept the new picture of the now me.
God bless you all!
At that time I walked like a drunk, completely a mess. Could not speak right, think right, grab words, had tremors, my little fingers did whatever they wished to do. Was completely off balance. The doctor prescribed me a walker with a seat to keep me from hurting myself as I had had multiple falls.
I was scared! Never heard of this before this M protein. Then started researching it. Great, got the worse one. They even did the special test for Waldenstrom's. Now that has an expiration date with it. Then the why and how did I get this phase, finally decided to worry one day a week as that was not helping me at all.
I don't use the walker any more and my balance is better. Still have my relapses that are no where near what I was. I manage my stress, which is easier said than done. I go to my appointments. Found my nerves and muscles are dying and will get worse with the M protein going up, says my neurologist. I have it in my feet, hands, calves, back, and hip. it is encroaching it's way up my body, but that is what I can expect.
I miss my life. I read about the person who exercises and all; that does not work with me. One work out and I am in pain and down for 3 days. Just riding in the vehicle more than fifteen miles hurts me for days after. I don't know if others feel this same way or not. With my other issues it is hard to distinguish the difference between what is from this and what is from that or the other thing.
That is my story. I do joke around that is my salvation and how I cope even gallow humor which some people don't get? But I find it funny! I do miss my life and I do miss me. I just need to accept the new picture of the now me.
God bless you all!
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