My husband has just been diagnosed with multiple system Astrophy which is a very rare condition so I am reaching out for advice and help. Linda.
Linda Turner : My husband has just been... - Multiple System A...
Linda Turner
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Clayton2020
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My husband has just been diagnosed too. So I too am a little overwhelmed by the future. Let me know how you get on.
Will do i have my daughter helping to explore things to.
Hello Clayton & Seashell
First of all, I'm so sorry that you both separately need to be here and yet you are very welcome. I'm sure there will be a chorus of people saying 'get in touch with the MSA Trust'. The advice and support they can give is some of the best in the world. They really are the specialists who will hold your hand as you go along the MSA journey.
The MSA trust web site is full of useful information, however do be selective. MSA is an odd condition; everyone's journey is different and so just because you read about a particular symptom or issue, it doesn't mean your loved ones will experience it as well.
There are many MSA trust support groups throughout the UK and if you can join one of those you will find others who have walked the same path and who are only too happy to give help and support.
Likewise you will find that this forum is totally there to help and support others. Please feel free to ask any questions you may have, there will be others who have asked at some time, just the same question, and who will be able to help.
The last bit of advice I would give is be positive. Concentrate on what you can do, not on what you can't. Jackie and I had some wonderful years after diagnosis, we were lucky enough to be able to travel to Russia, Burma, Iceland and throughout Europe, because we were determined not to let the beast of MSA stop us.
Take care, Ian
Hello Ian, Thank you so much for taking the time to reply to my post and for your good advice, especially about Travel, which is becoming more and more difficult for me to manage supporting my husband. Part of me wants to believe he has been wrongly diagnosed but I expect this is not the case. He was diagnosed as having a stroke nearly two years ago but since he has deteriorated quite a bit since then and along with other symptoms has now been diagnosed MSA-c and not a stroke. I will remain positive. Thinking of you Linda as I expect all sorts are going on in your mind too. Julie
Hi both
As Ian has said contact MSA trust for support as they have vaste experience across many areas that you will need as you travel through your MSA journey.
The forum is full of people on the same journey who are at different levels who will answer any questions you have with there own experiences.
As Ian says keep positive and adapt ask as early as you can so you are informed.
Goo d luck
Paul and Sue
Thank you so much X
I can only reiterate what the previous posts have said. I would also add that you should seek out support from local resources. I'm supported by Carer's Plus North Yorkshire and support for Carers, Scarborough. There may be people in your area. Also get in touch with your Occupational Therapist for equipment needs.
Such good advice from everyone else that there’s nothing much for me to add! The wisest thing that I was told was always to remember that not everything happens to everyone and not all at once.
Do try to hold onto that otherwise it does become overwhelming both in the present and looking at the future. Make lists to help you to prioritise your questions and the things that need to change sooner rather than later.
Finally, never regret what might appear to be a misdiagnosis. It would’ve been what was reasonable on your husband‘s presentation at the time. Many of us were told MSA only much later on in the course of our illness and this is understandable because it is so hard to diagnose and it’s largely a process of elimination.
Hard to work out how to do it right now, I know, but try to enjoy what you have and not regret what is lost. we are all here rooting for you both! G x
Hello Clayton2020 and 1234seashell ,
I’m a husband who’s recently been diagnosed with MSA-P. I would echo the others here who have encouraged you to get in touch with the MSA Trust. I was diagnosed in September and already they have helped massively with my PIP application (disability benefit), and run a get together for local people with MSA and their friends and families. Plus my GP and psych nurse were really grateful for their information packs. My clinical team has grown rapidly, and only a few of them are familiar with MSA, so we are learning about it together as we go. The MSA Trust nurse, Jill, is there to advise if we are stuck. For example, my urologist or in touch with her about managing my blood pressure during and after a recent operation I had.
There are many good people to be found, and I’ve not seen any trolls here on this forum.
With my best wishes,
Tim.
Thank you all for your positive advice. It’s early days into the diagnosis so am going to take step by step. Julie
Hello Both,
Not much to add but do what you can, leave what you can't and adjust to the changes as they come.
We've been doing this since 2016 and still adjusting.
Ask any questions, they're a very friendly bunch here and will happily share experiences when they can.
Take care
Derek
