Hi, I was diagnosed with Cerebellar Atrophy/Unknown Ataxia in Apr '22, & "strong suggestions indications (from MRI etc) it's MSA-C" (which I'd suspected myself from Feb anyway from my own research!). Various odd symptoms since 2019 - wobbly, aversion to stairs, poor writing, lose of typing skills, slurred speech, screaming in leep (REM disorder) etc! I'm asking please,is there anything else that I need to do now (whilst I've got control).....I've joined MSAT, got literature, doing exercises, got physio, SALT (& done voice banking), do hydrotherapy, got OT referral, doing Health LPA (got financial one), reg GP appts,seeing Neurologist 7/11,anything else I need to arrange now please? I'm feeling OK apart from psychologially (!) & low energy levels main problems at present. Still walking (stiffly,& with stick), already sold my car as didn't feel safe driving anymore. Hints/tips for appt or in general very welcomed! Thanks for reading this far!
Anthing else I should do?: Hi, I was... - Multiple System A...
Anthing else I should do?
Hi, you have done a lot ! I'm a bit like you I think, trying to look ahead and plan. Sometimes this feels like a race between me and MSA. Things you haven't mentioned are;
1. Hospice. I self referred for councelling early and consultant has now referred and i have started a 12 weekly session day hospice. They are helping with lots of things.
2. Councelling (see 1). I never thought I would need this but being told one has a terminal prognosis was such a shock I tried a session just in case and it is now an essential for me.
3. Wheelchair. The day you need it it needs to be in the house so get it early if you can. especially if ramps,etc need doing.
4. Carer. Have you got one ? Spouse? What happens when they can't cope or need respite ?
5. Benefits. Lots of info at MSA Trust.
6. Will.
7. DNR , consider at same time as LPA(health), get advice from consultant and hospice.
8. Dietician. help with low energy levels ?
9. AND **** MOST IMPORTANT..planning how to enjoy life/have fun. Dare I suggest making a bucket list ?
Hello, welcome and as always , so sorry you need to be here.
Wow, you have been busy it seems to me that you've covered almost every front I could think of. Perhaps the only thing I would suggest is don't put off to tomorrow what you can do today. Be as positive as you can be and try and enjoy yourself not getting too focussed on the condition itself. When Jackie was diagnosed we were determined to do as much as we could. We travelled, we carried on doing what we could, ignoring what we couldn't. We still do that now albeit her condition has deteriorated somewhat. Enjoy every day and have fun!
Take care, Ian
you and rev badger seem to have covered most of it althoughI would like to suggest more about the hospice. mine was local and they used to tell them at regular conference meetings any thing they thought the gp ought know saving me an awful lot of time on the phone especially when they thought i was getting too near the end of my tether. i never had to convince the duty doctor because they trusted the local hospice. does not sound much but it is an enormus help. best wishes to you. remember two things. ....Never take no for an answer and remember that if you cant make something better you can always make it worse. I don't think you are in danger of that with such a positive attitude
Thanks for all your very useful hints, tips & advice = brilliant! Thanks also for your encouragement that I’ve been doing the right things to pro-actively put things in place for the future - my husband says I’ve always been an organiser & a “control freak” so I’m still doing that whilst I can! I feel I will then be more settled to like you say, live life, do memory making stuff & take each day as it comes! Thanks again for your in-sights. Nice to meet my “new family” here, I’m sure we’ll be chatting lots! Hopefully today’s a good day for you all. 🙂
you have done so much in such a short time. Well done.
The advice that you have had from the others covers most of what I would have said too. Your symptoms are fairly similar to those that my husband started with, however he had bladder symptoms too from early on.
Everyone’s symptoms vary and so you can’t really know exactly what you are planning for but having some thoughts about how you will use your home in the future when needing to use a walker and then wheelchair, and if you live in a house then how you are going to deal with getting upstairs. And an accessible bathroom plan! If you look at these things earlier then you have time to make them nice adaptations to your home, I still love the en-suite wet room we planned and installed and took our time over and it’s 3 years today since Geoff died ! Something to talk about with the OT when they come
In your dealings with the MSA Trust then a conversation with Sam Fitzgerald about financial issues can be helpful. And if you are near enough to get to an in-person support group then it’s good to meet others local to you who are experiencing things that you are, or join an online group via Zoom, all the details are on the MSA website.
And then as everyone else said, do the things you can whilst you can. Life is for living, try and do things you enjoy and make great memories. You can fill your life and thinking up so much with ‘ fighting’ the disease that you don’t live it
God bless, Diane
Look into Power of Attorney- health and finance
Thanks, we did a financial LPA a few years back, so that's OK, but I'd put off doing a health one.....until my initial diagnosis of Ataxia in April! Started one on-line back then, but somehow didn't finish it off until just this week (6 months later!). Following the "substantial evidence of MSA-C " diagnosis (?!) in August, its been on my mind ever since! Did it myself on-line (Gov.uk), found it fairly easy to do (form filling), but really struggled with the "preferences & instructions" bits! In the end, I left instructions blank as the Attorney then HAS to do those things so someone said don't put any, but when I tried to put some preferences in, it wouldn't accept them, so left them blank too in the end! It's all witnessed, but not posted yet! Anyones thought regarding preferences or not? I'm having honest & frank conversations with my husband so he knows my thoughts.
So sorry to hear that. Came as a shock when my husband was diagnosed with this. Somehow you learn to live with it ,make the best of every day like everyone has said. I find the wheelchair stage a bit of a challenge. We live in a house. We use a wheelchair downstairs, stair lift and a wheelchair upstairs. We have a wheelchair for going on short walks, my husband has a muscle problem in his right arm so he can’t sell propel therefore I push (great exercise!). We have an electric wheelchair but is a faff getting it in and out of the car, There is a dual battery you can to use on a manual wheelchair but mixed reviews and I’m thinking about it. So I guess this is leading up to getting the right car with a ramp and an electric wheelchair. Something to think about maybe. xx.
Thanks for your reply, we're in a house too....just finished refurbishment work over the last year (not because of me), but luckily changes we've made will be helpful (eg. more open plan, garage conversion to room etc), but we've already started talking/thinking about future issues & due an OT home visit after Christmas. I've got to face up to this situation, but it's tough & bit depressing tbh! Trying hard to just get on with things, like you're all doing! Unfortunately we have no choice sadly. Take care.
Frenchoak…you are amazing…an inspiration!! You have certainly got on with things. My husband has the added ‘gift’ (Parkinson keeps giving.…we laugh at that) of Orthostatic Hypotension (low BP fainting etc) , However, strangely enough as time goes on you get more experience of dealing with situations. Ramps, grab bars, walking frames, OT etc make life easier… and anyway everyone is different and I’m sure with your great attitude you will cope handsomely. Xx
Ahh thank you so much for your kind words. I think "I'm coping"(!) reasonably well at present as I'm a big organiser & planner, so realise I have to do as much now to organise my future care etc as I can. If I can find a "positive" out of this mayhem that has so rudely interrupted my life, its that I spent 22 years working in children's palliative care, so I've a good awareness of the vagaries of the NHS and know what palliative care means & how supportive & helpful hospices can be etc. I also co-ordinated care for my Dad's 4yr terminal illness, so I know it's a major uphill battle for carers all the time. It's hard work, so I'm just rushing about (well, hardly rushing!) like a mad thing, trying to organise as much as possible in advance for my husband not to have to worry about. Personally, it is also important to me that people (health professionals) get to know "me" now, not just later. Good wishes to you & your husband.
Hiya
You have done loads. I still haven't been diagnosed but I've been 'wobbly' for over 4 and a half years! I asked thedrs about being referred to a hospice and they said there was no need at this stage! When this started I was still doing loads, running, all kinds of fitness, teaching exercise classes including spin, playing golf and hiking so the drs said that there was nothing wrong with me and it was because I was over 60 🤣.
I knew and know my own body so I knew it was a problem. Today I am in a wheelchair, cannot stand even if supported but I still try to do as much as I can. Lately I've been sick if I move too much especially my head so I haven't been swimming for a few weeks but I'm hoping to try again this weekend as I've started on anti nausea tablets (metoclopramide). I manage to get on my spin bike twice a week and use the rowing machine and seated leg press at the gym once a week. I love music, reading and TV too. Just do whatever you can while you can. I say every day is a bonus even if it's very different from what you used to do👍
Keep positive ☺️
H
😘
Hi Helen, I cannot believe they still have not given you a diagnosis after over 4yrs. Have you tried "insisting" your GP refers you to a specialist e.g. neurologist ?
Ken
HiI'm on my third neurology consultant😂 so I am being seen but I must be a bit of an enigma 🤣
H
☺️
Or attempt DIY MSA DX via
movementdisorders.onlinelib...
At the very least this would identify the contentious symptom issues i.e. those possibly not related to MSA or those requiring further investigation. A useful issue for discussion with the neurologist maybe.
Unfortunately I don't have personal experience of such a discussion with my own consultant yet as she is waiting until I have a "final" test, the DAT scan, before ultimate Dx. Now it's just "Possible MSA". However my own DIY Dx via the new MDS criteria in the link is clearly "clinically established" and as time progresses I develope new MSA symptoms anyway such as the recent cold hands and feet and dysfunction of body temperature regulation, yet another autonomic failure.
Good luck with your 3rd neurologist !
I get really cold hands too! Feet get cold in bed at night, then cramp, unless I wear cosy bedrock! Still wore them in July's heatwave! Husband thought I was bonkers!
😂🤣😂
If you wear glasses, "it might be your varifocals"!.......that's what one GP told me in June 21!! Despite fact I've successfully had varifocals 10 years plus! 🤣😬🙄🤪
They sound a bit like my GPs😂
Thanks for your reply and sorry to hear about your problems and getting a diagnosis....that must make life even harder for you. Despite all those challenges you are keeping positive, hats off to you. Hope you get somewhere with it all soon. Take care.
Hiya, my Nan was originally diagnosed with Cerebellar Ataxia and a year or so later was diagnosed with MSA. Sounds like you’ve managed to do a lot, that’s really good. I think the most important thing is to have a good support network around you and to definitely just enjoy what you’re able to do now! 
Hello everyone, 👋 🫂 thanks again for all your useful information and comments. Thought I'd update on my progress! Got a new GP as previous GP has left my practice (she was excellent, typical!), so far with new GP, I've had to start all over again, symptoms, explaining MSA-C, what's happened to date, who's involved blah, blah, blah! I asked her to make referral to hospice for emotional & psychological support 1st Dec, I saw on my NHS App she did it next day - excellent I thought! Nothing heard from hospice, so I rang them this week....no referral received! Turns out, GP filled form out, but had to send back to her secretaries to send on....GP didn't send! Gone today, month later! Grrrrrrr!!!! I'm desperate for some support as recently I've found it all very overwhelming emotionally, so it's frustrating that a month's been lost. OT home visit today, so bathroom grab rails & shower seat on way. Don't get me started on PIP claim form saga! Ordered 2nd Dec, arrived 31st Dec with return by date of 2nd Jan!! Me thinks not! Sam from MSA Trust helping me tomorrow. So, it's still all systems go this end! No rest for the wicked so they say, but I must've been very wicked!! Hopefully Christmas & New Year ok-ish for people (I found it a bit tough to be honest, but hey-ho!) Big hugs all. x
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