Happy to be here but not, as I'm sure you all get. Seems like a very supportive community which is lovely.
I care for my husband who was diagnosed with probable MSA in 2017. Symptoms started occurring in 2014. So its been a weird one in the sense that for ages we weren't sure whether it was MSA because the info the consultant recorded was not what we'd told her. So many discrepancies and he doesn't have all of the symptoms but we've been told since you don't need to have all symptoms to have a diagnosis. I think the diagnosis has been hard to accept as well because this all started because he hurt his back and was prescribed Tramadol for pain relief which he only took for 3 months due to night terrors and making him a little unsteady on his feet. 6 months later he had a flu jab and went from a little unsteady to really wobbly and having to lean on walls whilst walking. At that stage he was told to take up zumba and just enjoy life. His walking subsequently got a lot worse, then he was diagnosed in 2017. His whole family think its not MSA and its the Tramadol/flu jab and I don't think he thinks he has it either. He won't access any support from the MSA Trust or anyone else. I unfortunately think it is MSA due to the symptoms he experiences, but I always keep hoping its not, naïve I know, even though the consultant is 90% sure it is MSA. That just leaves us seeing how things progress day to day, but since lockdown and not being able to get him out of the house he's now only able to furniture walk.
Has anyone else experienced question marks about diagnosis and being uncertain?
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Niknak74
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We're also newbies to this and lime you it's all a bit overwhelming.
I can't say we've experienced the same poor build upto the final diagnosis as J was diagnosed with Parkinson's first which is apparently very common.
None the less, it doesn't really change the outcome and shock...then coming to terms with it. Like you I'm really looking to live it out as well and as happy as possible, but getting over the realisation can take some time i guess, and wee also in that mode too.
Thanks Boyyo, really appreciate your reply. It is a shock and especially hard as there's no-one I know who's even heard of it so this forum is a great thing. It is cliched, but just to know you're not on your own, does go some way to gaining comfort. and yes, retaining happiness is certainly what were trying to do regardless!
my dad was diagnosed at about 79 years old , started with loss of balance and falls and then affected his speech , unfortunately everyone is different , it took about 2 years to get the proper diagnosis
and took a while for my dad to accept it , as he was always an active person , it does sound like it is MSA by the things you are describing, hopefully you can do as many things as possible in case it is
msa trust are brilliant so definitely get in contact with them
thankyou , he was ready to go he had had enough , yes even if he isn’t interested , it’s good for you to get into and even meet and chat to people in the same situation , I found this forum so helpful and lovely, even if you want to vent , they are so supportive x
I am new to this community as well. They are very supportive. My husband is still being treated for cerebellar atrophy but the neurologist keeps narrowing in on MSA-C. The changes since we saw the neurologist in January are astounding and unfortunately it is not positive. I think where we are at right now is that we have ruled out any know cause that might be treatable and no medicines have aided him in his coordination or mobility so we are just taking it one day at a time. He has had 3 falls in 6 days this past week so far. He is trying to work but it is very difficult for him as his speech is also affected. he still drives on occasion I will come home and find out he has taken off somewhere but usually not. We are just trying to enjoy what he is able to do right now. He is also a furniture walker and not safe with a cane or walker. Good luck to you and your husband.
Thank you. Its so very similar to our experience. My husbands not driven now for nearly a year, too unsafe and his employment was finished in July. I'm so sorry to hear of your husbands falls, its very scary when their mobility and balance is so bad. The best of luck to you both too, this definitely feels like a good place to gain support and share so very happy to have found it. Thank you x
At first it was thought that Jackie had had a stroke and from 2014 to 2015 she worked so hard to rehabilitate until that day in 2015 when we were told that due to her continuing decline it was most likely to be this strange condition called MSA!
We still remember that day of diagnosis so well, and the starkness of the response when we asked what could be done for it.....nothing.... except treat some of the symptoms. We went through every emotion possible..anger, sadness, frustration and some despair. Looking back, we then perhaps did the best thing we could have done. We vowed that this beast of a condition wasn't going to ruin what time we had together. This might not be what we had worked all our lives for, not what we had planned, not what we would ever wish on anyone, but we weren't going to be robbed of our happiness together.
Due to Jackie's acute loss of balance we quickly realised that a wheelchair was the only sensible option for most of the time. We had a decision, walk 20 metres and then exhaustedly fall; or be pushed for a mile in a wheelchair and then walk 10 metres. For us it was a simple decision. We bought the best wheelchair we could find, travelled extensively, had fun and made loads of memories.
Our successes are smaller nowadays but we still try and make every day count; doing as much as we can, when we can.
Hopefully you can have some fun too. Take care, Ian x
Hi Ian, thanks for sharing. I'm so sorry Jackie has this horrific condition, but you both sound like you've taken the most positive attitude with it despite the struggles.
I wish I could get my husband to see it that way i.e. a wheel chair and I could get him out and about and make the most of his life. Unfortunately he won't entertain the idea (which I do understand) but it means his life is currently inside our home. Covid makes it all the more difficult of course as it has for everyone.
I'll just keep trying to encourage him. I'm a very positive person so try and keep his spirits lifted as best I can, which I'll always do. We still laugh sometimes, which is very precious.
You always question diagnosis. The hard thing is everyone is different and experiences different things at different times with various degrees.
Husband was diagnosed with Parkinson 8 years ago and only last year changed to MSA. So a whole new thing to learn. He has only left the house twice since lock down and both times only for a trip to dentist. He has only been to the garden a handful of times this year. His world is definitely shrinking as his mobility is getting less and less.
This forum I find great to find what is ahead or could be ahead and also for support and questions.
Take care of yourself and treat yourself every now and then! You need to look after yourself so you can take care of the other half!
Thank s for that and I totally agree! Trying to look after myself to make sure I can look after him. It is I realise a very difficult journey for us all.
That's hard to have been managing Parkinson's and then an MSA diagnosis, it is a lot to learn and get your head round. But there's clearly so much knowledge here that everyone's willing to share its quite overwhelming! In a good way though
I hope you're treating yourself too and looking after yourself x
Mum (she's 73) had 7 years of a parkinsons diagnosis before this being changed in Aug 2019. We were told that the diagnosis can really only be made when it is advancing and because it presents so differently in each individual case it's a case of eliminating other things. There is no definitive test and then managing the symptoms. In my mum's case, she's also presenting at the rare end of an already rare condition so it's been very difficult.
Diagnosis for us was just awful, mum deteriorated very, very quickly too.
I'm so sorry to hear that about your mum, that's really hard. This horrific condition just robs people of their lives and its devastating to watch. Your right the diagnosis is usually by eliminating everything else, Paul was cerebellar atrophy then probable MSA. It'll sit as that now as there's nowhere else to go from here.
I just think we have to be there for them and try and maintain as much quality of life as possible. And failing that just love them, which you clearly do with your mum x
thank you for such a lovely message. We have the added pressure at the moment that mum is cared for in a nursing home (they're amazing) and due to Covid - visiting is limited so we can't give her the support we want to. We do like you say just let her know how much we love her x And make sure we have support from people in the same boat as us which helps so much - you're not alone!
I feel a lot less alone now I've found you kindness in this forum! I'm glad you're mum's being cared for so well, that'll give you great peace of mind, especially as covid is messing up visiting. Sure she'll know you miss her x
Sorry to hear about your husband, you need time to let all this sink in.
They thought my wife had MS, then Parkinson's then about the same time as your husband it was changed to MSA.
The MSA trust is very good and we have to accept what the doctors tell us even if we don't want it to be true. The times i've thought it might not be MSA but there are many symptoms that are not shared by all.
In our case there were a few symptoms that my wife had in common with others so now we just get on with it and make the best we can of our situation.......not always easy but what choice do we have.
It does help to share experiences with other members and also get a few helpful tips along the way.
Keep smiling and make the most of each day, whether it's MSA or not your husband is obviously not well......... but also lucky to have you there looking after him.
Thanks for that and I totally agree with what you've said. just have to accept it and make the best.
I wish P would accept some support but hopefully that will come later. It's all tangled up in acceptance and as he's not there yet with that so support won't be accepted. I'm patient and it's his journey so I don't push him, just encourage gently.
I'm sorry that it has been and probably still is a hard journey for you and your wife, I just hope like you say, you can both smile and enjoy life together. That's definitely the focus.
Thanks Derek, really appreciate your reply and sage advice
Just wanted to say hello, and welcome you to this group. It has given me a lot of insight to this disease, and support where I had no one to turn to. My husband was diagnosed in 2019 with MSA-C, but had symptoms for at least 2-3 years prior. We are at the stage now where he falls quite frequently. We have gotten him a 4 wheeled walker, which he will use, but seems to still have what he calls 'where his leg gives out'. My husband's family also does not believe this is what he has. His sister, who is a chiropractor is the most in denial. Since I am his care giver, I listen and support the decisions he makes with his care, but ultimately know it is this dreaded disease of MSA-C.
Thanks for the reply and so sorry you're going through this too. P has a 4 wheeled walker like your husband which he reluctantly uses. As hard as it sounds I refused earlier in the year to take him out of our home if he didn't use it as he's 6.5 and I could no longer support his walking (I'm 5.9). There seems to be a weaker side for MSA sufferers, a little like the effect of stroke or there has been in our case so I understand your husband saying this. I hope he can sustain less falls using the walker.
The family in denial bits a tough one. I keep swinging from 'he needs to face it so we can plan his care and give him as much quality of life' to 'let him and the rest of his family live in denial and this gives them all hope'. So inevitably I do nothing, but like you say listen and support the decisions he makes with his care, even if that's non-engagement with anyone medical other than his consultant. I do worry sometimes that once this has reached its inevitable conclusion, I'm going to beat myself up about should I have pushed him more to get more support but that will just mean I've spent the remainder of his life being critical of his decisions and making him even more miserable.
For what its worth, it sounds like you're doing a great job supporting your husband.
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