Diagnosed almost two years ago with MSA-C, at the age of 69. My husband (now about to turn 77) and I had been asking questions about my loss of balance, incontinence, etc. for three years before we got to see a neurologist (at the request of our GP). One look at an MRI scan that had been taken 18 months earlier, and he told us that everything was not normal. His provisional diagnosis of MSA was confirmed following a second scan and some tests.
We moved house just over a month ago (to be near two of our children) and are still finding out what help is available in this area of Oxfordshire.
I used to enjoy a 5k run, a few years ago, and now use a rollator to walk around the block (on a good day) . Now I only go out with my husband's support.
My main difficulties now are balance, mobility, co-ordination, communication, loss of energy, swallowing and double-incontinence. My appetite is very good, but I am gaining weight. We try to eat healthy foods, that are nearly all home-prepared, and try to avoid cakes, biscuits and other unhelpful calories.
I try to stay positive and cheerful, and I thank God that with all my problems I have no pain.
It will be good to get to know some of you in the coming days.
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MinasGerais
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Hello and welcome albeit as I always say, it’s a shame you have to be here. I’m so glad you are approaching things positively as I’m certain that will help you so much in the months ahead.
Your list of ‘difficulties’ is almost identical to those if my wife and sadly typical of MSA.
You say you were diagnosed two years ago and so I am sure you will have come across the MSA Trust. Their specialist nurse who covers Oxfordshire is Jill Lyons who I’m sure will be of great support you.
We have a support group that covers Oxfordshire Worcestershire Herefordshire and Gloucestershire which we call the four counties support group. We meet monthly through zoom and have about 20 people each month. We all offer a great deal of support to each other and I’m sure you’ll be made to feel very welcome. Talk to Jill to get the details or feel free to direct message me and I will send you an invitation to the next meeting held on the first Wednesday of May.
I’m glad you found this forum and hopefully we will see you at the support group meetings as well.
Thanks Ian. Yes, we would probably find the zoom meeting helpful.
When we moved into our new home, a few weeks ago, we were very pleased that NRS turned up on the same day to deliver the various aids that couldn't come with us from Bournemouth. This was thanks to the O.T. co-ordination. However, when it came to the provision of pads, through the bladder and bowel service, we have had to go through a complete re-assessment. Having performed all the tricks of measuring fluids IN and fluids OUT, and recording everything as evidence, on their special form, we then had to submit the forms to our GP for his approval and forwarding! Needless to say, we are still waiting to hear from the bladder and bowel service. Surely there has to be a better way. The form informed us that the recording was necessary to enable a proper diagnosis and treatment.......Well, we already had the diagnosis (and measuring fluids was never going to achieve that) and there is no treatment available. So we were not impressed by the inflexibility of their procedures. We'll probably mention this to the MSA Trust, and perhaps they'll be able to talk sense into this situation, and save others from this unhelpful and unwelcome experience.
Looks like another bright, sunny morning, so we'll sit out by the front door for our coffee, and get to know a few more neighbours. (We are on a very quiet road.) Actually, we had an elderly neighbour call on us, yesterday, from 4 doors away, just to say Hello.
We are in a McCarthy and Stone terrace for the 'over-55s'. It was only built 2 years ago. The previous owners of our house had a lift installed. It goes from the kitchen-diner straight up to the en-suite bedroom. So, Sonia has not needed to even think about the stairs.
Hello you two. You have done the right thing in finding a suitable house already adapted. We have had months of work to get our adaptations done . I didn’t know McCarthy and Stone did houses, I thought it was just flats, it sounds wonderful. Good luck with everything.
Hi! Thanks for your response. Yes, we were committed to a move from our large, family house; nothing there was really appropriate for Sonia. (Steps, stairs, no en-suite, no easy-access shower....) And so we were looking for something more suitable, and were thinking that it would have to be a bungalow or a flat, but so many of those needed modifications. And then this place came up on the Agent's web-site, and we couldn't believe the details; better than we could have even thought of. We do believe that Someone was preparing this place for us! The ground floor is flat, from front gate through to the little back garden. And although there is a ground floor bedroom (which we are using as a 2nd lounge) and a ground floor shower room, the lift means that we are able to use the master, en-suite bedroom on the 1st floor, or even the 2nd bedroom (en-suite) with its large shower.
So, we are very thankful.
We trust that all your changes will turn out just right!
Just wondering whereabouts you are in Oxfordshire. We were in South Oxfordshire until three years ago and use Jill Lyons and Professor Hu asas our consultant at the John Radcliffe. We moved just slightly over the border into Buckinghamshire three years ago to a bungalow but we are still part of the four counties Msa group which has been a great support to us so I do hope you join it
Hi, and thanks for your communication. We are in Chipping Norton.Sonia had a video consultation with the neurologist in Southampton just 4 weeks ago.
He said that he would be passing our information on to someone in this area (Banbury or Oxford) but we haven't heard anything yet. To be honest, we have not found the times with the neurologist very helpful. They seem only to be monitoring Sonia's condition. Although I do understand that there is probably very little that they can do. Even when I've asked questions there has been almost a reluctance to be open and clear. Contrast that with our GP back in Bournemouth who, even a year ago, was prompting us to be thinking about 'end-of-life' issues. Perhaps that's where the nurse comes in?
My advice would be to research and explore as much as you need to do. This is a rare condition and there is still much learning to be done. We find that taking the lead has helped enormously and my Dad who has MSA-C is well supported as a result. Sending best wishes.
Welcome to the forum, lots of helpful people here so if you have any specific questions just ask.
MSA can be a different journey for each sufferer but L has also had very similar experiences to you like balance, mobility & co-ordination etc etc.
L was walking with my support but now cannot support her weight at all but like you she does not have any problems with pain.
She has the continence issues and we were given pads to make life a bit easier but they have not been very successful so we now buy our own Tenna pants.
Don't know what support you can get but we seem to be able to get all the equipment we need and the hospital type bed has been great as the rubberised matress can be wiped down after any accidents. But getting anyone to come in to assist is a different story, I think this is means tested, I don't know if others have more success.
L can eat in a fashion but everything else is down to me, washing & dressing etc and the dentist told me she is not doing well with her teeth so that's another little job I've taken on.
We do try and carry on regardless and one way we differ from you is eating, L has to put up with a lot ( including me ) so she gets to eat whatever she wants and if she puts on a bit of weight then so be it.
Derek, Thanks so much for taking the time to respond. Sounds like we could be on a similar track; just a bit behind you. We were told that the various conditions would each continue their deterioration at a steady rate, but our experience seems to point to matters speeding up more than we anticipated. But then we have had a busy couple of months with one thing and another, including moving house, so this is possibly not typical period.(?)Yes, indeed, Keep smiling! There is still so much to be thankful for!
Hello...was interested reading about how MSA is affecting your health. Seems as though you have to deal with many aspects of this nasty condition. I think you are coping admirably.I was diagnosed 3 months ago at grand age of almost 82. I had a long list of ailments but put it down to old age.
Neurologist at first appointment informed that I had MSA.
Up to now I am not suffering more than usual. None of my ailments have worsened since diagnosis.
I do find that I'm prone to depression brought on by apprehension for my future and what this condition has in store for me.
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I walk with a walker and/or stick and usually manage couple of hours outside my home before my legs tire. Am so grateful that I don't suffer too much, apart from osteoarthritis in spine. Again I put it down to body naturally ageing.
Thank goodness for MSA Trust and their team of specialist nurses who have helped tremendously.
Hiya, I have been having symptoms for 3 years but up until recently was told that eveything was normal. I see my neurologist tomorrow with an update on my latest MRI. Any support, albeit chatting on this forum is welcome 😘
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