Mum newly diagnosed with MSA-P and we are all struggling

[Purplestar2]

Hello everyone

I hope you don’t mind me starting a post, I’ve never really used a forum before so I am very unsure if this is the correct place to post.

My Mum (69) developed a twitch in her finger many years ago which went away. She was a very slow walker but apart from that we didn’t think anything was amiss, she seemed to shuffle her right leg when walking though now come to think. Then in 2020, immediately following her retirement we went into lockdown. Towards the end of that year she was starting to struggle a little but it wasn’t until the March 2021 we saw that she was loosing muscle mass quickly and struggled to cut tough food so needed a sharp knife. She started to loose strength on her right side, with Bradykinesia and we sent her for investigations as they weren’t sure whether it was a stroke etc but after 5 months to get results the DAT scan showed lack of dopamine.

She was advised she either has Parkinson’s or a Parkinsonism and was started on levodopa. This help but she still continued to loose significant weight and muscle mass. They couldn’t figure out why. We changed to a new consultant and they were worried because she was unable to steady herself (balance) and has always had low blood pressure. They did a test of her heart and because there are no Lewy bodies present and expected with Parkinson’s, and due to her blood pressure and new incontinence she has been diagnosed with MSA-P.

Does this sound familiar? She’s currently in hospital and they have reduced her levadopa medication as they have decided it wouldn’t work on her condition, this made her bed bound and needing someone to feed her so I have been fighting and they are finally increasing it back up to the level it is at.

Her speech isn’t very good, she is skin and bone from muscle wastage and is now less steady on her feet. She didn’t even use a stick around the house before she went into hospital. She has a leg ulcer developed through them not treating her cellulitis very well but she is now in a compression bandage so hopefully this helps with that aspect. Alongside all this she has Osteoporosis (stage 4).

I am in shock at her determination in the last 18 months and at a complete loss at what to expect, what is in her best interest going forward in terms of providing the care she will need? My father passed away 6 years ago and I officially live 1.5 hours away but I am on maternity leave so I have been staying with her since the beginning of the year. If nothing else I like to think she’s been enjoying her time with her daughter and granddaughters company even though we haven’t been able to do much.

Any help or guidance would be much appreciated, I don’t even know what questions to ask! The hospital seem to have written her off, deciding she’s deteriorated again with her MSA-P and that it hasn’t been their actions to blame. I’m just not sure if she will get back to where she was or of anything really. She just looks so ill, is this the end?

[Yanno]

Hello there, I'm so sorry you need to be here and you sound so troubled. I'm as surprised as you are about the rapid decline of your mother. Everyone's journey with MSA is different, I know that, however they initially thought my wife had experienced a stroke and it was a year before diagnosis back in 2015.

My immediate thought is I would get in touch with your local MSA Trust specialist nurse and talk things through with her. You will find details of how to contact her at their web site at msatrust.org.uk. There's lots of information on their site about MSA and how to live well with it. One word of warning...don't think that your mum will get every symptom you may read about. Everyone's journey is different and one person may get completely different symptoms to another.

Be positive! A diagnosis of MSA doesn't mean you are 'written off' to use your phrase. Talk to the specialist nurse, get some facts and go and bang on the door of the hospital and expect them to give your mum the help she deserves.

Good luck, Take care, Ian

[TK-67]

I’m so sorry you’ve found your way here. My mum had MSA too, I know it can be a hard word but your local hospice will be able to provide you and your mum with support too. It’s a horrid disease but all about managing symptoms as they come, the hospice can help in unlocking some of the support services you need. Has the GP been helpful?

[phamwales]

HI

Many here on the forum will recognise your current fears. It will feel like there is such a lack of information and clarity. I was desperate to know "what next?", "when do things change? "

Yanno correctly pointed you at the Trust and the Trust nurses. There are also groups of sufferers/carers that meet up every so often. I went as a carer and was struck by how much it helped to chat with folk further along the journey. As Yanno said, most journeys seems to be different but there are plenty of common patterns, solutions and help.

We found the Speech and Language Therapists (SALT) to be very helpful and wish we'd found them earlier. They help with the difficulty of swallowing too.

Occupational Therapy were an essential component too. They kept us going with solutions to keep Gill moving safely.

You're providing the most precious gift, your company and love.

[Lincsoldbird]

HelloWelcome and I too am sorry that you need to find yourself. We too are quite new to the group.

There does seem to be quite a lot of similarities between what my husband suffered and what your dear Mum struggled with in the early days.

Although he always struggled with shuffling but he put it down to needing a new knee.

He had his knee replaced and 3 weeks later he started to be what he called out of sorts and losing his balance, this would lead me to taking him to A & E where they thought he had, had a stroke he was in hospital for 3 days, which was how long it took them to do a swallow test. All this was smack bang in the early throws of covid.

Since then he has never had a definite diagnosis infact it changed four times, we changed consultants a few weeks ago and there we have it MSA.

As we left that appointment again we felt unsupported and so I had to do my own research and here I am.

Hopefully you will get some help here from other sufferers and by reading some older threads, but definitely the MSA Trust website is your number one place to get guidance.

Our GP has been worse than useless throughout all of this and seem very uninterested in finding anything out about this illness.

Good luck and best wishes.

[1burtonst in reply to Lincsoldbird]

Hi there ,could you tell me what procedure you had to take to change specialist. I am going through the same dilemma as you XJanet x

[Lincsoldbird in reply to 1burtonst]

Hello JanetAs hubby was struggling to get a diagnosis of any kind Parkinsonsor otherwise, we actually visited a Parkinsons group and 3 people there separately mentioned the same Drs name.

I went to our gp who are much less than helpful, where I was told we would have to wait 2 years for an appointment with them and not to bother! I then phoned the new Drs secretary who told me if they got the referral he could have an appointment in 2 weeks.

I really had to fight to get that referral but within 2 weeks he had an appointment and more importantly a diagnosis.

I hope that helps a little, its just finding the right Dr or Consultant to suit your wants and needs.

[1burtonst in reply to Lincsoldbird]

I just know the feeling .our consultant doesn't know the first thing about PD he may be a great neurolagists in his feeled but not in PD .our GPS has set the ball rolling after 2 years of getting nowhere ...these forums are brilliant for help and advice best wishes X Janet x

[Purplestar2]

Hello, what we found is that whilst you think a neurologist would be the best bet as they are in theory top of the chain, a Parkinson’s specialist consultant was the one who looked into it further and has the time to see Mum more regularly. The neurologist put a the follow up appointment in for 18 months after initial diagnosis whereas Parkinson’s consultant tends to be every 3 months and is on hand when needed. I would search for a Trust witching your region that has a specialist.

[1burtonst in reply to Purplestar2]

Thanks x

[esj20]

I'm sorry you found yourself here.

Never be afraid to ask.

All the best

[ReverendBadger]

Hi , yes your Mum's journey towards an MSA diagnosis is, very unfortunately, fairly typical. As indeed is yyour reaction to it. It's devastating and difficult to cope with. you will have dozens of questions and worrries but there is a lot of help out there. The tricky bit is getting it and joining it all up.

Previous replies have mentioned those I found helpful (my diagnosis 26/5/22);

MSA Trust, Hospice, SALT, OT, GP

In addition I found some councelling/talking therapy helpful, had a very good neuro physio who made some referrals to other departments. A dietcian worked with SALT on weight loss.

Bowel and bladder health dealt with some aspects of incontinence and the Parkinson's nurse also deal with MSA.

I have sort of got a Multi Discipline Team but it is informal and not under any overall management. I generally find it best to deal with each symptom as a stand alone problem. Fix or help one thing then move on tp the next.

I would also advise you to ask adult social care from your Mum;s council to do a needs assesment, check with the welfare specialist at MSA trust first regarding financial implications.

Do come back and ask more questions as they occcur to you, there are lots of us here with experience to share.

[GreenJo]

Hi - sorry you're having such a difficult time. My husband TC has also had an extremely rapid deterioration in 4 years. Diagnosed Parkinsons 2019 - MSA 2022. He's been bed bound since October 2022. His speech has gone and he now uses a computer which lets him control the TV and write messages (got this through speech therapist) He had feeding tube inserted in March 23 so at least no issues now with nutrition and he's catheterised. Parkinsons nurse and community rehab team have been very helpful. Lots of info on MSA site and MSA Nurse has been helpful. I would agree that there's a lack of co-ordination. I've pushed to involve professionals as necessary and professionals already involved good at pulling others in. E.g physio realised there was a breathing issue and I then pushed for consultant input. Sorry your mum's in hospital - we have very good carers 4x daily. TC now on palliative care register so hospice nurse is now co-ordinating his care - mainly pain control. Hope some of this info helps. It's a difficult path and at times a difficult fight to get the care needed - keep fighting.

[Purplestar2]

Thank you to everyone for getting back to me. In terms of mums deterioration this is largely due to her becoming very frail. Is this something you have have all experienced? Her underlining symptoms (stiffness, slowness and lower voice) are managed by her levodopa medication so it’s more so her muscle mass that are causing her issues with strength etc.

[MSADaughter in reply to Purplestar2]

Hi and welcome. We just learned about a muscle mass solution - possibly - and are just starting it out. My Dad has MSA, has been bed-bound and has lost so much muscle mass, but apparently there is great data on HMB and Vitamin D helping regain muscle mass in patients even without exercise. The gym bros use it, as do seniors. It is an amino acid derivative, so not synthetic. Here is an example of what we are trying in the US: walmart.com/ip/Nutricost-HM... (I believe the dose is between 2 of these capsules a day.

[Hidden]

Hi sorry to read about your mum. Has your mum been assessed for support by Social Care. She maybe able to have careers come home to help with her personal care and preparing meals and feeding her. Also a referral to occupational health for assessment of her mobility. Ask occupational health if they have other MSA patients. OC may be able to suggest which services are able to support her. Good luck.