Hello!
So my mum has had Relapsing Remitting MS for 17 years now and over the period of this year her mobility has slowly declined resulting in multiple falls. Fast forward to today and she is currently in Neuro rehab and is really struggling with her speech and mobility but something that is very out of the ordinary for her is hallucinations and extreme confusion and memory problems, she currently doesn’t know where she is which is hard to see as she’s only 54.
They have done a CT scan that showed nothing and she has no infection that they can find. I’m just wondering if anyone has experienced the same or has had a family member in a similar situation?
Thank you for sharing anything you can with me I really appreciate it!
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Hello Beth, welcome to the forum. How utterly distressing for you. MS is a cruel beast.
Many of us have cognitive deficits. Memory problems are sadly very common, as are difficulties with organising our brains. Hallucinations and utter confusion outwith infection or new brain lesions are a bit less usual, but still happen relatively often.
There’s not much I can suggest to help except to offer you my empathy and just say that your mum is in the best place right now. Neurological rehab units (in my experience) aren’t the most comfortable places to either be resident or to visit. But they know what they’re doing. They’ll have all the necessary experts drafted in to help. On a day to day basis the nursing staff tend to be wonderful and utterly dedicated. I’ve spent time in my local rehabilitation unit several times and can testify to that.
Keep talking to us on here, we may have no solutions, but can offer support.
Sue
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Hello Beth
Just wondering if your Mum is taking any new medication that could have caused new symptoms?
My family have proved sensitive to medications with some upsetting results (although they did not have MS). When my Father was alive he was given medication for a heart problem and he could see giant squirrels bouncing down the ward. My sister suffered a bleed on the brain resulting in neuropathic pain and was treated with gabapentin and she could see fairies in pink fluffy carpet slippers! Hallucinations stopped when their medication was changed.
Just a thought as some people are incredibly sensitive to certain medications. I have MS and I have a long list of medications I cannot tolerate.
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Hi!
thank you so much for your reply.
I just feel like we’re at a bit of a stand still at the minute as this is so out of the ordinary for my mum.
The CT scan shows some progression of her MS but nothing else which is so strange and not what we were expecting. We already had an idea that her MS had gone to secondary progressive but we’re still yet to have that confirmed as at the minute they’re all still a little baffled as to how this has happened so quickly.
She’s had problems with brain fog before but nothing as extreme as this. When I visited her yesterday she was shouting when I was away from her bed and she was shouting her brothers name and pointing as she could really see as if he was there but he wasn’t and it’s getting her so upset and frustrated.
I feel stuck between going along with what she can see or questioning her about it… either way it just feels cruel!
Sorry for my rant, I just feel out of sorts today and feel constanly on edge and anxious especially just before visiting as I don’t know what version (it feels) of my mum I will get today.
Anyway, I hope you are doing well! And I really do appreciate your outreach of support it’s nice to feel that people understand.
Beth
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Aw Beth
I’m quite sure I speak for anyone who reads your posts, it’s so bloody upsetting for you and yet it could be any one of us. (Those of us who are in a more advanced stage of MS at least.)
I looked at your first post and felt like that could have been me. I’m the same age as your mum, 54. Have had MS for almost 25 years and have progressed to SPMS or possibly progressive relapsing, or just Advanced MS. I’ve got some cognitive problems, my memory is pants and have really significant mobility trouble as well as rotten bowel and bladder trouble.
There’s so little any of us can say except that I just have a strong feeling that you and your mum as well as the rest of your family need our support. Even if it’s just writing that we care.
Sue84 made a really good point about drug reactions. I hope the doctor(s) taking care of your mum have looked at her drugs and considered adverse reactions. My own neurological rehab doctor is brilliant at drugs. He’s always made very good suggestions about the drugs I take. I hope your mums Dr is as good.
Look after yourself, try not to worry too much (I know, easy to say, hard to do). And just hope that this is something that passes.
Sue
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Thank you so much for your reply. It really does mean a lot.
It’s hard never fully knowing isn’t it? And I obviously can’t fully understand as it’s not myself going through it but it must be.
It really seems to have come all at once with my mum which is baffling the Neurologist! But on todays visit she’s a little less confused and a lot calmer today which has made me feel a little more settled but everyday is different.
There’s been no change to her medication but it is something I will bring up with them on monday for something to review to see if anything comes of it, I’ve not thought of that so thank you for bringing this up.
She is being discussed on the MDT meeting Monday which will hopefully bring some light to thigns or at least some more answers.
I’m taking a day off from the hospital tomorrow and rest up for the week that follows.
Thank you for your kind words and support. I really hope you are doing well!
Beth
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