Hello its julie again my husband has told me he has heard voices on 4 different occasions now, twice at work he thought he heard a little girl talking sounded abit like our youngest and twice he heard his dead mother.He doesnt seem to be getting any better he had appointment through for mri of spine in may still waiting for other tests.I read that some people get auditory hallucinations with ms depending on were the lesions are on the brain one of his lesions are on frontal lobe.He has lost central vision in both eyes for last 2 yrs dont know if this could add to it ,he is starting to really worry me now his health is taking rapid turn for worse.He is worried people will think he has schizophrenia i dont think for one minute he has ,none of symptoms fit.xxxxxxx julie
Hi again Julie,
As with other posts of yours, it does worry me that stuff is going on that is not obviously MS.
Potentially any function of the brain (which is everything!) could be affected by MS - however, some things are very much rarer than others. Whilst I’m sure auditory hallucinations are hypothetically possible, depending on where the damage occurs, I don’t think I’ve heard anyone on this forum complain of them before - and I’ve been around at least a couple of years. So whilst possible, it’s certainly not widespread.
What makes you so confident Hubby’s symptoms couldn’t be psychiatric in origin? I don’t think everyone with schizophrenia acts in ways that are obviously “mad” - especially in the early stages.
Equally, though, a surprisingly high percentage of the “normal” population (I forget how many, exactly) have reported at least one experience of auditory hallucination. The voice of someone who has died is a particularly common one, and happens to many people who would not satisfy any definition of “ill”.
I know he won’t like it, but I think perhaps it’s time to start getting a little more assertive with Hubby, and reporting things he won’t. It’s not satisfactory that still nothing is being done about the weight-loss/malnutrition, and that so far the only person involved with this is a neurologist - and you’ve indicated it might be up to three months before you get any more answers out of him. I’m not criticising him for that, as I know tests and investigations take time, but I really don’t think it’s OK to just leave the weight loss situation for another three months, pending more information. It is more urgent than that. What on earth is your GP doing about a seriously malnourished adult? It shouldn’t be up to what the neuro says - they’re not specialists in nutrition or digestive problems, and it’s possible the weight loss is not neurological at all.
Now Hubby is hearing voices, and I’m not sure that’s a problem exclusively for the neuro, either. I think it needs to be reported to someone, and he needs a proper assessment of his condition and needs - including, possibly, mental health needs. Although I wonder if it’s linked to the weight loss, as I believe fasting is linked with an increased tendency to auditory hallucinations. So if Hubby was, in effect, “fasting” (not receiving the nutrition, despite taking it), I wonder if it would have hallucinatory effects.
I think, with all of this, somebody needs to be told - against Hubby’s wishes, if necessary, as it’s too serious to be worrying about what people will think! I know it’s hard, when an adult won’t cooperate. My mother went on a ridiculously extreme diet, for years, from which I attempted to dissuade her. With the result she’s now irrevocably damaged her health, so I wish I’d been more assertive, and perhaps snitched to the doctor about what she was up to, so he could have had a word. I’m not saying your hubby is on a fanatical diet, or that his problem is the same as my mother’s, at all. But sometimes, what feels like a betrayal can be in the patient’s best interests, if you see stuff going on that really concerns you, but they have not been open with the medics about it.
You might have to take the initiative yourself, and tell his doctor about some of these things, rather than keep “suggesting” it to Hubby - for him to take no action.
Tina
x
Hi tina i know i was thinking about getting in touch with gp or neurologist behind husbands back he needs a shake up i keep telling him but he just leaves it.I am working myself up as i see him slipping down hill fast,it worrys me when he tells me stuff as i am starting to think he has something serious going on.xx julie
Its me again just gone down stairs he has a letter to go to department of clinical neurophyiology evoked potential clinic next week investigations of nervous symptoms to identify and ivestigate areas of nerve damage.There are three types of tests that they do visual,brainstem,ssep with electrodes dont know if he is having all three?Maybe i could tell someone there as brainstem is used to examine auditory hearing nerve runs from inner ear to lower part of brain as they might be able to shed some light?.xxxx julie
[quote=“Anitra”]
Hi again Julie,
As with other posts of yours, it does worry me that stuff is going on that is not obviously MS.
Potentially any function of the brain (which is everything!) could be affected by MS - however, some things are very much rarer than others. Whilst I’m sure auditory hallucinations are hypothetically possible, depending on where the damage occurs, I don’t think I’ve heard anyone on this forum complain of them before - and I’ve been around at least a couple of years. So whilst possible, it’s certainly not widespread.
What makes you so confident Hubby’s symptoms couldn’t be psychiatric in origin? I don’t think everyone with schizophrenia acts in ways that are obviously “mad” - especially in the early stages.
Equally, though, a surprisingly high percentage of the “normal” population (I forget how many, exactly) have reported at least one experience of auditory hallucination. The voice of someone who has died is a particularly common one, and happens to many people who would not satisfy any definition of “ill”.
I know he won’t like it, but I think perhaps it’s time to start getting a little more assertive with Hubby, and reporting things he won’t. It’s not satisfactory that still nothing is being done about the weight-loss/malnutrition, and that so far the only person involved with this is a neurologist - and you’ve indicated it might be up to three months before you get any more answers out of him. I’m not criticising him for that, as I know tests and investigations take time, but I really don’t think it’s OK to just leave the weight loss situation for another three months, pending more information. It is more urgent than that. What on earth is your GP doing about a seriously malnourished adult? It shouldn’t be up to what the neuro says - they’re not specialists in nutrition or digestive problems, and it’s possible the weight loss is not neurological at all.
Now Hubby is hearing voices, and I’m not sure that’s a problem exclusively for the neuro, either. I think it needs to be reported to someone, and he needs a proper assessment of his condition and needs - including, possibly, mental health needs. Although I wonder if it’s linked to the weight loss, as I believe fasting is linked with an increased tendency to auditory hallucinations. So if Hubby was, in effect, “fasting” (not receiving the nutrition, despite taking it), I wonder if it would have hallucinatory effects.
I think, with all of this, somebody needs to be told - against Hubby’s wishes, if necessary, as it’s too serious to be worrying about what people will think! I know it’s hard, when an adult won’t cooperate. My mother went on a ridiculously extreme diet, for years, from which I attempted to dissuade her. With the result she’s now irrevocably damaged her health, so I wish I’d been more assertive, and perhaps snitched to the doctor about what she was up to, so he could have had a word. I’m not saying your hubby is on a fanatical diet, or that his problem is the same as my mother’s, at all. But sometimes, what feels like a betrayal can be in the patient’s best interests, if you see stuff going on that really concerns you, but they have not been open with the medics about it.
You might have to take the initiative yourself, and tell his doctor about some of these things, rather than keep “suggesting” it to Hubby - for him to take no action.
Tina
x
[/quote] IT WORRYS ME TOO XXX
Hi Julie, this is certainly serious enough for you to speak to your GP. I doubt he/she would tell you to see the neuro! Something has to be done and done NOW!
luv Pollx
I have to tell you that i am the same. i hear things and on a couple of occasions i;ve seen a someone but it strange coz you know it’s not real. I was just fascinated that it came from my mind.
It’s certainly possible for lesions to cause auditory hallucinations, but like Tina (and yourself) I think you need to see someone about it now rather than play the NHS waiting list game because there could be something else going on. Please go and see your husband’s GP and get things moving re his weight and these hallucinations. The neuro may be the right person to speak to about the hallucinations, but I suspect a neuropsychologist would be better qualified. Please note that a neuropsychologist is not the same as a psychiatrist - the first works with patients with brain damage, the second works with patients with mental health problems. Given your husband’s MRI results, I suspect that a neuropsychologist would be the best person to speak to first, but your GP should hopefully know.
The evoked potentials will show what parts of the body and nervous system have been affected and also help to narrow down potential causes (either supporting or challenging the MS diagnosis). Unfortunately, these tests don’t test specific symptoms so they won’t shed any light on the hallucinations (I don’t think anyway).
Karen x
Thanks everyone again nice to hear your input ,very valuble information, yes i think i need to speak to someone ,His appointment is 19th april thats this friday for envoked potentials not next week as i thought ,so it might be worth me saying something wile there with him.xxx julie
Hi Julie,
Sorry to sound bossy, but no, I still don’t think that’s the answer. Not to denigrate the people doing the evoked potentials, but they will be “just” lab technicians, whose job is evoked potentials, and only that - not the right people to approach about serious and potentially unrelated issues like malnutrition or hearing voices.
I think you need to arrange a dedicated GP appointment about these issues specifically, and not rely on bringing it up at a routine appointment for something else, with people who will have no specialist interest in these matters.
I’m still not convinced your husband’s symptoms are all linked to his neurological condition (MS, or Devic’s, or whatever it may turn out to be). So assuming they’ll automatically be addressed through that route could be barking up the wrong tree - like asking your optician about toothache, next time you’re in there. You would book to see a dentist, not trust everything to the optician.
Tina
x
I completely agree with Tina. Friday is NOT the right place to bring up anything new - the people who do the tests will not be able to help or even advise (other than to tell you to see a GP!). Kx
Thanks karen i didnt really understand what the tests were ,read abit about them thought there would be a doctor there aswellHe has mri in may and lumber punctue in may, blood test appointment hasnt come through yet.Feel so fed up after one neurologist told him he had ms, now another is questioning it.As for the weight loss he wont go to doctors ive nagged at him in vain at least he isnt losing anymore.I may have to go doctors about it on my own,but dont know if they will talk that much about it with me.He is so stubbon lol like me, two peas out same pod ,both fiery.We had an arguement last night he said some horrible stuff.Then said i dont know how you put up with me,He makes me so mad sometimes but i love him no matter what.When i think back i was trying to think how it could of started what triggerd it then remembered.Before vision central vision went before weightloss he had swine flu.He was really ill i was scared he was going to die he stayed in bed for days.and days He was so bad i called out emergancy doctor he refused to take swine flu tablets as they carried risks.I wonder if that could of triggered everything because it wasnt long after that eyes went and weightloss happerned then other symptoms came later.Can something like swine flu trigger ms?xx julie
I’m afraid I have no idea if swine flu could trigger MS, but I doubt it. I would think that all it would do is make a mild type of MS get worse (e.g. trigger a nasty relapse).
It is possible to get things from viruses and infections that are like MS so I think it’s really important that you tell his neuro about the swine flu. It may be nothing, but you never know.
Please do speak to the GP anyway. He/she may not be able to discuss your husband without him being there, but they can still listen.
Kx
i think i will i am getting frustrated myself its like banging my head against a wall with hubby lolxx julie
Hi again Julie,
Good to see you still around. Yes, I agree the doctor will not be able to discuss Hubby’s case with you in any detail, due to confidentiality issues, but the positive thing is that somebody on the medical side will be tipped-off about what is REALLY happening, and may be able to use their influence.
True, Hubby cannot be forced to have any investigation, assessment, or treatment he does not agree to, but it’s remarkable how sometimes, coming from an authority figure like a doctor, it can have more weight than you constantly “suggesting”.
My poor dad would not listen to anything we (his family) said, yet when a nurse came along and said: “Now stop this nonsense, Mr. M”, he’d suddenly be all cooperative! So sometimes they think family are “just fussing”, and it’s better if it comes from someone more neutral.
Tina
x
Hi everyone just got back from hospital husband had eeg of brain chequerboard test no other test ,was in there over 1hr did test three times eeg flatlined many times during tests husband said they were whispering.His leg was kicking up wile test was going .They asked him about any symptoms he mentioned about everything including the voices they looked worried he said, I didnt go in as they said it was dark and i had to stay in waiting room.If eeg is flatlining alot is his brain asleep?strange stuff XXX JULIE
As far as I know, they are ONLY testing signals from the eyes reaching the visual cortex (back of brain), not the activity of the whole brain. We already know Hubby has severely impaired sight, therefore it would not be surprising if some of the signals weren’t getting through. No, it doesn’t mean his brain was “shut down” for those times.
How on earth did he know it was “flatlining”? Is that what they actually told him? Because when I had mine done, literally all I could see was the chessboard, and I would have had no idea at all what my results were looking like. In fact, I think they were monitoring them from another room, so I would not have been able to see, even if I’d been “naughty”, and turned away from the chessboard, and had a look round.
Another possibility is the electrodes simply fell off! I didn’t put a lot of faith in the validity of my tests, because halfway through, some of the electrodes fell off. I couldn’t tell anyone what had happened, because I was in the room by myself, and the operators were not with me. But I thought they would be able to tell from their monitoring that something had got disconnected, and come rushing in to re-attach it. They didn’t.
When they eventually did come back in (to change to the other eye, or something), I immediately pointed out that some of the electrodes fell off, but they didn’t seem that bothered (certainly didn’t do that part of the test again).
So I wondered just how accurate it had been, if they hadn’t been able to tell some sensors fell off!
Mine came back normal (even though I did go on to be Dx’ed with MS). So I was never sure if they’d really been normal, or if they couldn’t tell anyway, because of the electrodes falling off.
They probably would have been worried about the “hearing voices”, but only because it’s completely outside their sphere of expertise!
Tina
hi tina ,he told me the electrobes were still attached but when they looked at results he heard them saying they flatlined quite a few times and other person said they looked flat ,they did test 3 times each eye and results were the same he heard them whispering about results afterwards ,which always makes people worry.Its that waiting game again in a way i hope it does come back as abnormal as it shows something is happerning that does need attention with abnormal results from mri brain scan aswel .xxx julie
Hi Julie,
I wouldn’t worry too much: with someone who has severely impaired vision AND suspected demyelinating disease, I’d more-or-less expect the VEPs to be abnormal. I was quite surprised mine weren’t! Unfortunately, normal VEPs can’t prove you don’t have MS. It just meant my optic nerve wasn’t affected, at that time, but I went on to be diagnosed anyway (MRI plus symptom history).
You’re right that in someone we already know is ill, an abnormal result is more informative than a normal one. It should give them a bit more to go on.
Tina
x
yep thats what i was hoping for maybe when all test results go together the neurologist will be able to give us a straight answer of whats happerning xxx julie