I am a carer for my 63 year old mum who was diagnosed with PPMS at the start of the year. She is the fifth member of the family to be diagnosed and was brought to our attention when she started getting confused about where she was and what house she was in. After an MRI we had a diagnoses. Since then the confusion has been sporadic and while she is still relatively mobile she needs help getting up stairs and up from seats.
Last night she and my dad were in bed, he has a drinking problem and his own health issues as a result of meningitis two years ago. He was basically talking nonsense to her for about 3 hours about how ill they were and how she cannot do things and wouldn’t let up until she was agreeing with him about how bad their physical abilities and quality of life is… yes he is a real downer.
I think heard her asking ‘‘Who are you?’’ and ‘‘What is your name?’’ to him. He responded by saying ‘‘What do you think my name is?’’ and she answered correctly. She again asked him this morning what his name was. This evening she would not stay in bed and came downstairs saying she cannot stay in bed with him as he is not her husband, she thought he was her former BIL whose wife [her sister] died with severe MS about 10 years ago. I questioned her why she thought that and she said she was reminded of him by how he was acting and that she never really looked at him. She accepted when i told her he was infact her husband and then confirmed it for herself when she heard him walking about and coughing turning to me and saying ‘‘yes thats your father’’.
These events have seriously freaked me out and i have never heard of anything like this happening with MS, even though i know it is different with each person i have just always seen it happening with short term memory and following instructions and remembering recent events, not mistaking your family members for other people…
Does anyone have any experience with this or just any response?
I think this level of confusion is very unusual for MS and I suggest you get your mum along to the GP asap. It is possible she has a UTI (basically a bladder infection) which can cause terrible confusion. I live in sheltered housing and see my neighbours, when they have a UTI, become extremely confused. Once treated, they are back to normal.
It is also possible that she has the beginning if dementia which has nothing to do with her MS. Sorry that’s a very blunt thing to say… but I really think you need to see a GP as whatever is causing this should be dx as quickly as possible.
Cognitive problems caused by MS are common, but it is usually mixing up words, not being able to recall words, having problems working out money, sometimes even getting lost in a familiar area, but what you describe sounds far more worrying.
It’s very possible that it is something easily treated (for instance UTI… by the way, they are common with MS), or it might be stress related. Anyway I’m not a health professional so all of this is just guess work… so she does need to see a health professional, and the sooner the better.
Very difficult for you to witness this and have to cope with it. I hope you are coping ok. Do you have any contact with carer organisations in your area? They can be a great support.
Take care hon and fingers crossed it turns out to be something easily treated.
We had her tested for a uti a few months ago to see if it was causing the confusion about where she was as i suspected it was that for a long time. I was calling for about two months afterwards to get the results and they kept saying there were none until a girl told me ‘‘it came back clear’’, i am not totally convinced though. Getting her to the GP’s surgery can be a pain so i will see about taking a sample in as i am not convinced that she hasn’t got an infection. Do you know if they can dip it and get the results relatively quickly?
Between the symptoms developing and the diagnosis she had a kidney infection and was given anti biotics, after that there was no confusion for a good six months, i don’t know if this is a coincidence or not. She also wears tempa pads as she has trouble getting to the toilet in time and holds it too long as she won’t tell you she needs help to go and waits until you’re out of the room to get up and go!
She is sitting beside me here now as fully aware and ‘‘with it’’ as possible, i’ve never heard of episodic dementia and when she isn’t confused she is normal, well as normal as possible with the MS symptoms of recall and short term memory.
Are you able to contact the neuro for appointment?
I’m thinking she should really be referred to have kidneys etc checked out. I don’t think it’s a coincidence that the confusion cleared up after the kidney infection was treated. Sounds to me as if she’s having some ongoing problem that needs treatment. Possibly her kidneys not functioning properly? Anyway the episodic nature of the confusion really sounds like something is going on and not connected to MS.
How supportive is your GP? Are you able to phone and explain exactly what’s been going on?
Or MS nurse?
Have a list ready so that you remember everything and make sure you tell them about the kidney infection that had caused confusion and how it cleared up after the antibiotics.
I don’t know about the dip test.
Good luck with it hon. You sound as if you’re having a really hard time. I really hope someone listens to you and does the appropriate tests.
your mum needs a neuro physciatric assesment,its not very common but lesions on that part of the brain can and do cause dementia like symptoms some are mild like forgetting words,but some can be very severe,like not knowing where you are,and getting very,very confused, i get where i cant funtion at all, i forget how to do simple tasks, like brushing my hair, and brushing my teeth, mine, come and go just like my other mental symptoms, depression, anxiety,and panic attacks.i get it more now my ms has progressed, years ago when i was rrms i had it just the odd time, but now i am spms i get it a lot more often.its my worst thing about my ms,its really srtange,because when it eases off after a few months i am back to my old quick thinking self,until next time,but insist on the assesment,then you know what you are dealing with. when i first started with it the neuro dismissed it, and didnt believe me, as if i could make it up, he said’well we dont expect that to happen again’ !!! well you know what it did,and turned out that it WAS the ms causing it.
