So, when my husband was diagnosed with multiple myeloma in 2013, he was suffering through some very bad delirium. His diagnosis was actually begun in the psych ward. He recently had a mildly suspicious MRI, but the doctor does not think it is anything to worry about. This week we are concerned that we are seeing some signs of the delirium returning. I am trying not to over react. But it's hard. While delirium isn't a common symptom of myeloma, the conclusion that the myeloma was the cause came about simply because the chemo was the only thing that "cured" the delirium.
We aren't talking about a few hallucinations here, or trouble sleeping. It became increasingly difficult for me to keep him safe at home. And the whole experience was frightening, exhausting, and left me completely unable to work, leave the house, or do anything that might cause me to be distracted from him. I hope to never do that again.
So how long would you wait before you asked for a complete workup on his myeloma? He is currently testing every 3 months. And it's pretty basic labs. CBC with differential. IgG, creatinine etc. None of these labs were out of the ordinary for him. Creatinine was at 1.7, but he never drops below 1.3 and has always had some fluctuation there.
I don't want to seem ridiculous. It seems unlikely to me that things could be remarkably different without seeing changes within his CBC and other routine labs, those labs were ridiculously off at diagnosis. I'm trying to keep my husband aware enough to keep him talking about anything out of the ordinary. But I'm also trying not to add any additional stress.
His sleep has been off lately, but we had a concerning day on Monday. He forgot his daily meds, overdosed the dog, and could not remember if he had eaten. Now he is extremely worried about his sleep habits, and concerned by his "dreams". Oh, and my husband has a preexisting anoxic brain injury, but he appears completely normal in his day to day habits.
Any insight or thoughts would be appreciated.
Forums
Re: Delirium may be returning
Personally I would not wait. There is never harm in reporting what is going on, nor is it inappropriate to request testing or referrals. You have to be your own advocate. You know the situation best.
Go for it!
Go for it!
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heddleandhook - Name: heddleandhook
- Who do you know with myeloma?: self
- When were you/they diagnosed?: Jan 2015
- Age at diagnosis: 68
Re: Delirium may be returning
When the MRI was done, did they see if there was any plasmacytoma on his skull pressing against his brain? (Pulling at straws here.)
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Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
Re: Delirium may be returning
My husband "weirds out" when taking Ativan (lorazepam), an anti-nausea med some people use for sleep. I would definitely have him see his doctor asap, with you along for input. Have a list of all medications he is taking. It may not be his multiple myeloma causing the symptoms, but something is.
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rumnting - Who do you know with myeloma?: husband
- When were you/they diagnosed?: 4/9/11
- Age at diagnosis: 54
Re: Delirium may be returning
Hi Cindylouise.
Why did your husband have the MRI?
Cathy
Why did your husband have the MRI?
Cathy
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antelope1225 - Name: Cathy1225
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: May 25 2012
- Age at diagnosis: 55
Re: Delirium may be returning
Hi Cindy,
I'm sorry to hear about what you and your husband have been experiencing lately.
Rumnting's suggestion about your husband's experience being a possible side effect of a medication is a good one. I'd check to see if anything he takes, particularly things for sleep disorders or anxiety, can have that sort of side effect.
Has your husband had any blood chemistry work done lately? If I recall correctly, abnormalities in blood mineral levels, such as potassium and phosphorus, can lead to the sort of confusion your husband has been experiencing. Ditto, of course, for abnormal – especially low – blood sugar levels.
In case it's helpful, here's a common list of things to look for as potential causes for delirium:
http://emedicine.medscape.com/article/288890-workup
It's possible that his myeloma labs are okay, but his disease is relapsing, if his disease has become nonsecretory. But, if that were the case, I'm not sure you would be seeing any delirium-like side effects of the disease, since it's usually high protein levels in the blood that are at the root of that symptom. I guess you could see such symptoms if his kidneys or liver were being affected by the disease, but that doesn't seem to be the case from what you've reported.
If looking closely at his current meds and the lab results you now have doesn't give you an answer as to what is causing his symptoms, I would promptly contact his myeloma specialist, report what you're experiencing and that you can't think of a reason why, and ask if there is more that could be done to see if perhaps his disease is progressing and at the root of what he's now experiencing.
I hope this helps a bit. Please let us know what you find out and whether you have any more questions.
Good luck!
I'm sorry to hear about what you and your husband have been experiencing lately.
Rumnting's suggestion about your husband's experience being a possible side effect of a medication is a good one. I'd check to see if anything he takes, particularly things for sleep disorders or anxiety, can have that sort of side effect.
Has your husband had any blood chemistry work done lately? If I recall correctly, abnormalities in blood mineral levels, such as potassium and phosphorus, can lead to the sort of confusion your husband has been experiencing. Ditto, of course, for abnormal – especially low – blood sugar levels.
In case it's helpful, here's a common list of things to look for as potential causes for delirium:
http://emedicine.medscape.com/article/288890-workup
It's possible that his myeloma labs are okay, but his disease is relapsing, if his disease has become nonsecretory. But, if that were the case, I'm not sure you would be seeing any delirium-like side effects of the disease, since it's usually high protein levels in the blood that are at the root of that symptom. I guess you could see such symptoms if his kidneys or liver were being affected by the disease, but that doesn't seem to be the case from what you've reported.
If looking closely at his current meds and the lab results you now have doesn't give you an answer as to what is causing his symptoms, I would promptly contact his myeloma specialist, report what you're experiencing and that you can't think of a reason why, and ask if there is more that could be done to see if perhaps his disease is progressing and at the root of what he's now experiencing.
I hope this helps a bit. Please let us know what you find out and whether you have any more questions.
Good luck!
Re: Delirium may be returning
I'll try to answer all the questions, and thank you all for the responses.
The MRI was done due to increasing back pain. The MRI shows no lesions, or plasmacytomas. The MRI was from his head to his pelvis. He has mild degenerative changes in his spine, and mild marrow signal inhomogeneity in the pelvis may represent mild diffuse myelomatous disease. The doctor did not feel that the findings in the pelvis to be concerning.
My husband takes no psychoactive drugs because they are known to cause him to hallucinate, and is actually considered to be allergic to them at this time. And we've had no medication changes since March, and that was medication to control his worsening atrial fibrillation.
It has been a struggle over the last four years to know at times when to ask for further testing. The cardiac issues tend to be pretty cut and dried. You call, no questions asked. Anything regarding his mental status at times makes me wonder if I am crazy, or overreacting. But, the things we went thru prior to the multiple myeloma diagnosis were horrible. I want to avoid that, but don't want to seem like I am losing it or overreacting. And I hate to stress my husband further with my worries. But I know that is also happening.
I think with your help thinking things thru we need to request more in depth testing of his multiple myeloma. I just can't stress enough how much we need to stay ahead of the delirium and the multiple myeloma.
My thanks to all of you for your input. I have found it helpful, and comforting.
The MRI was done due to increasing back pain. The MRI shows no lesions, or plasmacytomas. The MRI was from his head to his pelvis. He has mild degenerative changes in his spine, and mild marrow signal inhomogeneity in the pelvis may represent mild diffuse myelomatous disease. The doctor did not feel that the findings in the pelvis to be concerning.
My husband takes no psychoactive drugs because they are known to cause him to hallucinate, and is actually considered to be allergic to them at this time. And we've had no medication changes since March, and that was medication to control his worsening atrial fibrillation.
It has been a struggle over the last four years to know at times when to ask for further testing. The cardiac issues tend to be pretty cut and dried. You call, no questions asked. Anything regarding his mental status at times makes me wonder if I am crazy, or overreacting. But, the things we went thru prior to the multiple myeloma diagnosis were horrible. I want to avoid that, but don't want to seem like I am losing it or overreacting. And I hate to stress my husband further with my worries. But I know that is also happening.
I think with your help thinking things thru we need to request more in depth testing of his multiple myeloma. I just can't stress enough how much we need to stay ahead of the delirium and the multiple myeloma.
My thanks to all of you for your input. I have found it helpful, and comforting.
Re: Delirium may be returning
Was your husband taking prednisone?
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cdnirene - Name: Irene S
- Who do you know with myeloma?: me
- When were you/they diagnosed?: September 2014
- Age at diagnosis: 66
Re: Delirium may be returning
No prednisone. He was never treated with steroids due to his delirium at diagnosis.
Re: Delirium may be returning
Before diagnosis, did your husband have a sleep disorder i.e. regularly talking in his sleep and moving around while actively dreaming?
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cdnirene - Name: Irene S
- Who do you know with myeloma?: me
- When were you/they diagnosed?: September 2014
- Age at diagnosis: 66
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