MS and Mental Health

Hi

im looking for some advice from anyone who thinks they can help. My dad is 68 and has had MS since he was 22. It’s been a long road but he is now currently bed bound, catheterised and unable to do anything for himself. He is experiencing what we are told is Psychosis caused by MS scarring on the brain. He has outbursts, calls us names, hearing voices who are telling him to say these things, and if he doesn’t say them he gets pain. These are also visual.

He suffered a bad attack last year and has never come back from it totally. He has kidney stones which has caused sepsis 10 times over the last year, he also has depression.

my main question has anyone ever experienced similar psychosis, we are just at our wits end, both blood and urine tests have been done and they are coming back infection free.

any advice anyone can give would be much appreciated

Hello Rach,

I’m afraid I haven’t got any advice. I just wanted to say I’m so sorry that you and your Dad have to go through this. It’s appalling.

Not helpful, I know, but I couldn’t ignore your post.

Anthony

Some drugs can cause hallucinations. My dad (not a ms sufferer- but well acquainted with hospital stays) has had sepsis several times and has definitely suffered from them. I’m not sure if it was the pain killers he was on or the antibiotics or a combination- he is on so many drugs it’s difficult to tell. My sister when she was alive suffered from a mental health illness which also resulted in her behaving as you have described, however when she was prescribed anti physcotic medication they subsided. The nursing staff should be able to advise if it is drug related. If it is resulting from lesions on the brain I’m not sure as the situations I have described are different to that, but surely the consultant whose care he is under should advise?

Hi Anthony, thanks for your reply. It is an appalling situation for anyone to be in, I just hope he can come through it.

i hope you are doing well

Rach

Hi Chatterbox, thanks for taking the time to reply. He has been off medication for psychosis for a while now and this has only just returned, do you think it could take a while to get out of his system? Although the voices/visuals are always there so he tells us, he manages to subside them, but recently it’s like he as no control over them anymore. This is worth mentioning to his doctor though thank you xx

Rach78, I’m sorry to hear about the situation that you and your family are finding themselves in. Yes, MS can affect the thinking and cognition. Here’s a link that may answer some questions - https://www.mssociety.org.uk/about-ms/signs-and-symptoms/mental-health/other-mood-and-behaviour-changes

Good luck and take care.

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In my sisters case there was always a period of time after she stopped taking medication and before she deteriorated again, but it may be different in ms when compared to a mental health Illness. Hopefully you will receive advise from the consultant.

Hello Rach,

I’m sorry that I don’t have anything helpful to say, but your post resonated with me.

My Mum is 62 and has had MS for almost 30 years, she is now bed bound and catheterised. While she doesn’t have psychosis, her mental health is very fragile and she certainly has outbursts, says awful, awful things and is suffering from depression (although she won’t do anything about it). I guess the reason for my message is simply to vent my frustration as to how little the cognitive/mental health aspect of MS is talked about and how little interest Doctors seem to take in it. It is hugely frustrating.

I’m so sorry you and your Dad are going through this. I hope you can both get some relief soon. X

RACH and Liberty Like Albrecht. Didn’t want to ignore your posts. I hope you can get help soon with these appalling situations. Anne