MS and mental issues

Primary progressive MS
1

Hi all, I wondered if anyone might be able to help? My wife’s mum has had MS for the past 20+ years, and has in the main chosen not to speak about it. I believe that was her own way of coping with things, or the way she felt was best for her personally to cope with it.

For that reason, I don’t have as much information as I might like so please pardon my ignorance in certain areas.

I believe it is PPMS (she has never taken any medication for it and doesn’t have relapses - the MS has slowly developed over time).

She has always carried on her life as normal as possible, but in the last two years or so it has become increasingly difficult for her to get around and so she decided she would have a wheelchair a few weeks ago. Of greater concern however is that over the last 6 weeks she has been having very serious confusion, going from high to low - whilst not in control of what she was saying, believeing she was time travelling, refusing to take medication/get dressed and so on. When she did speak she mainly spoke about the past. Then occasionally, just for a few hours she would be back to her normal self - but would the suffer from panic attacks.

She has also been getting bad UTI’s…which she has suffered from for a few years now I believe (she has very recently started to be catheterised daily by the district nurses).

We hoped it may be the UTI’s causing the confusion, but she is now clear of one and is still suffering from what I would imagine you would call some form of psychosis. She has been put on several types of medication to try and treat it, none of which seems to be working. Again I don’t know what the meds are, but they have changed them several times in the past few weeks to try and find something which works.

To cut a long story short, due to the worsening and the increasing frequency of the ‘psychotic episodes’ it has been impossible for her to stay at home unfortunately, as my father-in-law is no longer able to cope, and I think she may have been a danger to herself.

She is now in hospital, and is no longer speaking, eating or drinking.

One of my (many) concerns is that this ‘confusion’ may just be a temporary thing that can be treated in the longer term, and I don’t want her to ‘give up’. I can’t even begin to imagine how she must be feeling, but I wondered if anyone else has had experience of this and might be able to offer any advice?

Was there any treatment which helped?

Any useful suggestions would be very much appreciated.

Many Thanks in advance.

2

Hi Richrara, what a sad business.

Very tough on all of you and as you say it’s awful to imagine what she’s feeling.

I really don’t know what to advise. Hopefully they’ll be able to treat her in hospital and give her something to help.

You might find it helpful to copy/paste your post onto the ‘carers’ board where you might find a carer who has more experience of this.

Sorry can’t be of any help… it seems as if you have all been doing your very best to cope and I really hope that things improve.

Take care,

Pat x

3

Hi Richara

I read your post and my heart goes out to you. I’m very new to this and can’t be of any help but it felt rude to just read and run. Can the hospital staff or still better her neurologist not be of any help? She has obviously been seeing a medical professional over the years if she’s on treatment. Someone must have notes on her steady deterioration and they will be the best people to speak to.

They will have to protect her privacy but for her safety and the fact you obviously care for and want the best for her they should guide you.

I hope you get answers and wish you well.

Cath x

4

This is so sad to read Richrara - it sounds like you are all doing your very best for your MIL but it is obviously a very difficult time for you all. Pat and Cath have given you some sound advice. Hope this helps in some way! Sorry I cannot really help but wanted to show some support. I hope things improve for her, Teresa xx

5

Thanks very much everyone for your replies.
I will keep the board updated.
She stopped talking at all for three days, then yesterday evening - out of the blue - she was back to her normal self. More herself than we have seen her for almost two months. So it has given us hope seeing that behind all the confusion she is still ‘in there’.
She was aware that something had been happening and that she hadn’t been well, but didn’t have an idea of timescale.
My wife and father-in-law are seeing both the neurologist and psychiatrist today, and I have sent them a list of questions to ask, so hopefully they will be able to shed some light on what the prognosis is and the ongoing treatment plan.
Thanks again for your replies, it’s much appreciated.

6

That’s good news Richrara. Hopefully they will be able to give a drug treatment to help.

Please do come back and tell us how things progress.

All the very best,

Pat x

7

That s excellent news. Hopefully a plan can be made now for her safety and comfort. Please let us know how you get on.

8

Glad your MIL has shown improvement and is more herself again! Let us know how everything goes! Teresa xx

9

Thanks all for your concern, very generous of you. I have spoken to two of my friends today - one a hospital doctor, the other a neurologist who have both said that from what I am describing this sounds more likely to be a psychotic depressive episode rather than secondary to the MS. As I mentioned before, she has always been extremely reserved and what you might describe as ‘closed’ when it comes to expressing emotions, so it sounds like this could be a large contributing factor.
Thanks all again for your words.

10

This happened to my son several years ago so I can understand how frightening and worrying it must be for you all. My son is now fully recovered , he was able to wean himself off the medication within a few months although he had therapy for almost a year, which he said helped enormously. Touch wood…he’s had no problems at all since. I do hope your mother in laws recovery is as successful. Nina

11

Thanks Nina, do you know what the route cause of it was with your son? Any details of your experience could be really helpful and would be very much appreciated.
My mother-in-law is finally getting some serious attention from a consultant neurologist with MS experience, having now been in hospital for almost 2 weeks in an acute ward.
Having had UTI’s ruled-out as the cause by another consultant, the new consultant now believes the UTI’s are the route cause. *correction form earlier post: She is in a delirium, not a psychotic episode - which means the symptoms are ‘pyschotic’, but come and go, and it is caused by something physical rather than psychological.
To cut a long and quite traumatic story short, they are now trying to get rid of the UTI with a rarely-used type of antibiotic (Methenamine Hippurate) as she has become resitant to all other types.
She is unfortunately in a very bad way at the moment - which the consultant neurologist suggests may be due to the fact that they have taken her off amityptaline at the moment to rule that drug’s side effects out as being one of the causes of the delirium.
Symptoms are depression, halucinations, delusions, and doing things such as biting herself and others and throwing things around the room. They are sedating her when things get really bad (believe me, if I was in that state I would want to be sedated) not sure of the drug, but they have increased the intensity I believe from the Diazepan which she was formerly on.
To bring something to the thread which might hopefully be useful for other people with MS, we have found a herbal drug called D-Mannose which I am really keen to get her on, as it is meant to be very successful (check it out online and reviews), but at the moment we have to stick with the consultant’s antibiotic plan.
Thanks all for your concern and advise, we’re all very appreciative.
Best,

Rich

12

Hi Rich, Nina has been trying to post a reply… but she cannot post for some reason. She wanted me to tell you that she will post a reply asap and didn’t want you to think she wasn’t replying.

I am sorry to hear things have got so bad with your mother-in-law. Please God they find something that helps soon.

Best wishes,

Pat x

13

Hi Rich, I hope the rarely used antibiotic starts to work on your mother-in-law. Her illness sounds really dreadful - I am very sorry for her and all of you. Hopefully the doctors will steer her in the right direction. Take it a day at a time, it must be very upsetting for you all. Thinking of you, Teresa xx

14

Greetings

I, too, have had ms for nearly twenty years. I also don’t talk about it usually. The reason is because it is nobody’s business, not as a defence mechanism for coping. Maybe your mother-in law thinks that too.

Mark

15

I read this post at lunchtime and wasn’t logged on as at work, it stayed on my mind though… so sad but clearly your MIL is much loved and has a caring family around her.

I’m also quite new to this so can’t offer any advice.

I truly hope things improve for her

Sonia x

16

Morning Rich, I’m so sorry it’s taken me so long to reply but for some reason yesterday I was unable to log in to the forum therefore unable to reply. I think the cause of my sons illness was probably caused by a combination of stress anxiety and grief…basically too much for a person to cope with…he was most unlike himself…disappearing during the night…being totally introvert…a few temper bouts…he is now back on track…a happy healthy 41 year old, a devoted husband and an adoring Dad of four, however during this period whilst he acknowledged his children…it was as though perhaps they belonged to someone else…he seemed to lose all sense of reason and logic. We had no problems at all such as biting etc but he seemed to be living on his own almost in a world apart from us. I’m so sorry I don’t feel as though I am explaining this awfully well…when I read back over what I’ve written it sounds insignificant but at the time it was a total nightmare. I am also convinced that the paranoia and some of the more psychotic episodes were fuelled by some of the things he "used"during a rather “wild child” episode which lasted from about 16 to 20. Another nightmare at the time! He has since said that he came through both these terrible traumas because of the love and support he received…he rather sweetly asked us how we knew how to cope so well…this came as a huge shock to us…at the time we felt as though we were floundering about in the dark frustrated that we couldn’t do more. For years now I too have suffered with numerous UTIs and I do know they can have an enormous effect on people’s mental state. Whilst I have nothing on this scale I do know a couple of old people who have been severely affected mentally by UTIs. I really hope that the new antibiotics will help and hopefully the new consultant too. It such an awful time for you and I really do hope the outcome is as good as it was for my son. As I told you in my first post my son was prescribed medication at first…he eventually came to hate his meds as they made him want to sleep all the time…in his case cognitive therapy was an enormous help. In fact he is now back at uni taking a degree in psychology mainly due to the therapy he received himself. Years ago, after a stroke, my grandmother suffered an episode of delirium…this too was incredibly scary…a normally mild mannered, gentle, almost Victorian type lady turned in to an almost crazy woman who was clawing at herself and making no sense at all…this came on very quickly and was later put down to the extreme pain caused by infected piles…it was almost unbelievable that such a dramatic event was caused by something like this. I have read about D-Mannose but have had no experience of it myself. I wonder as your mother in laws case is so severe if you might not find more people with the experience to help you on the carers board, in the meantime I do so hope your mother in law will improve considerably very soon. Sorry I can’t offer more helpful advice. Best wishes, Nina x

17

Hi Nina, thanks so much for taking the time to write such a detailed and considered reply, you’re obviously a very kind and supportive person and it’s no surprise having someone like you helping your son along resulted in a full recovery!
My father-in-law is now going into the hospital to sleep in the same room as her at night - as suggested by the consultant to stop my MiL being so scared after dark (she’s also on 24-hour guard in the hospital by an outside agency). Yesterday she told us all what she ‘really’ thought of us. It was pretty hideous and hurtful stuff, but I’m sure she would be devastated to think she’d said these things.
My personal take on the whole situation having been very close to it, is that this is primarily a result of the UTI-induced delirium, and is also affected by acute anxiety and depression. To correct my ealier post, I have since been informed that she has secondary progressive MS.
No progress really to report though unfortunately, however the consultant has said she might be sent home within the week (presumably as they need the bed space). It’s hard not to think this would the medical profession “giving up” on her if this turns out to be the case, I’m now just trying to get the services lined-up (social services, local MS society, occupational health and Carer Support) if this does happen.
Let’s keep our fingers crossed for an imminent recovery. It’s hard for the family, but must be nothing compared to what she is going through. I suppose if there’s anything useful to gleam from this story, it would be to take extra care to try and prevent UTI’s I guess. Although from what we have been told by the consultant, it is incredibly rare for these symptoms to be caused by MS, and she has never seen it before.
Thanks all. X

18

It’s surprising how much an infection can change a person, especially when they’re elderly. Physically and mentally they seem to become completely changed. I was a nurse working with elderly people and have seen this quite a few times. I’ll admit that your mother in law seems to be badly affected but if it’s any consolation, when most recover they have no memory of how they were. I know it’s hard for the family to cope with but what I often told concerned or upset relatives was that the current behaviour was the infection speaking, not the person.

She’s very lucky to have you all and as everyone has said, your love and support will help her through it. Don’t let this infection affect your relationship, your mother in law is still hiding there. I just hope for your sake that the antibiotics work soon.

Take care.

Min x

19

I have an elderly mother and I live in sheltered, so I too see how much UTI’s affect a person. Confusion, depression & aggression are both common signs of a UTI.

It is such a big problem that it amazes me that we don’t hear more about it and can only hope that there is research going on to try and find a way to stop UTI’s for good.

Hoping things improve soon Rich,

Pat x