Others experience

[GP1988]

Sorry to post given everyone here is going through this but I just wondered about others experience.

MiL diagnosed 4 years ago. Despite upping meds etc she is increasing in hallucinations, confused speech and is now getting very aggressive. Is this more than MSA? Is this a common or even rare but experienced issue? She's crying a lot, sleeping a lot (both symptoms I understand as being towards the later stages but despite reading up I can't find a lot about it. She was always a rather reasonable person in healthy life but it's like watching a dementia patient at the moment

Thanks in advance

[Yanno]

Hello GP, never worry about posting on here, that’s why many of us are here- to help others with our experiences.

The aggressiveness you talk about isn’t something I would associate with MSA, others may have seen this. In my experience most of those living with MSA, cope remarkably mildly with what is a difficult condition. I can’t think of anyone from our support group who has reported this.

Being tired and sleeping a lot is very much a part of MSA which from my perspective appears to affect most.

Sorry, this probably hasn’t helped much. Assuming you are a MSA Trust member, I would have a word with your local MSA Trust specialist nurse.

Take care, Ian

[Derkie54]

Hello,

I'm echoing Ian's post, we're all here I help each other, if you have any questions then please ask.

Also my wife has deteriorated physically but is not aggressive at all, she is very calm and seems to accept everything.

She does sleep a lot and can laugh for no reason but the symptoms of this MSA really can vary for each person.

I'm sure you're all doing your best for MIL.

Take care

Derek

[Tonk]

Hi GP1988,My wife has very similar symptoms in relation to the sleeping a lot and confusion. Verbally she can be very caustic and has lost many of her past traits, including observing social norms.

She had periods when she became much more confused and a little confrontational but, this was down to a series of urinary tract infections. She now takes a prophylactic antibiotic daily and this has prevented a reoccurance of her UTIs.

I hope this helps.

[Paul_and_Sue_Wood]

Hi

We are all here to help each other any way we can.

Tiredness and lack of cognitive function are common and a result of MSA as your body gets weakened fighting the conditions

My Sue had lots of nightmares at one point but a little medication helped that.

Aggressive behaviour is unusual but I suspect this could be a frustration or psychological result of the massive life changes happening. Quite a few sufferers have various medications that help towards anxiety and more so explore this with the GP or Neuro consultant.

Hope this helps.

Paul & Sue

[Craft7]

Hello like others not symptoms I associate with MSA but have recently with my mum who had delirium due to UTI so might be an idea to get urine tested .

[GP1988]

Thanks everyone for taking the time to reply. I'll get FiL to do a UTI check. I know all the official symptoms don't list aggressive behaviour but thought it best to check with the folk who actually know what's happening!

If I'm being honest I think we are coming to the end, FiL promised to keep her at home but I worry about what it's doing to him. He has Marie curie nurses come in on odd nights to stay up with her, getting a ceiling hoist installed too hut she screams at the mobile hoist we use atm. It just doesn't match up with what I've read and others experiences.

[Anovis]

MSA is a very difficult disease to diagnosis. Is it possible that she has Lewy Body Dementia? The hallucinations and aggressive behavior along with the other symptoms you provided are consistent with LBD. Might be worth exploring.

[calebsmum]

Those symptoms are not ones my husband has experienced

[fixedit]

As far as I know, confusion and hallucinations aren’t generally associated with MSA , I think it’s a really good idea to talk to the MSA nurse.

[TK-67]

Hi - sorry this reply has taken a while, can I ask what medications your MiL is on. The reason for asking is often people are initially put on parkinsons drugs, as these stop to work with MSA patient, these can be increased or other drugs given to enhance these. The effects can be what you describe. This is what happened to my mum, it was awful and led to a lot of issues. It's a very fine balance with PD meds and MSA and mum was being given more and more when in fact she needed less. This was the impact of not having specialist MSA support, as soon as we found a consultant who knew so much more about the condition things did easier to manage. Mum also did have some erratic behaviour later on and a low dose of setraline did help too.