We went to see a Neurologist yesterday and I had high hopes , as we haven’t been seen for nearly two and a half years . I came out feeling tearful , frustrated and really angry . We were rushed as they were running late because they are thorough apparently ! My husband is a PERSON with MSA , the last year has been the worst of our lives and it’s really taken a toll on his health and me emotionally . He is not just an object and no one can understand what our lives are like (apart from on this website ) All the things that have happened this year , are part of our lives and maybe in the past but I will never forget them . These people would soon learn if they lived with this condition and with the loved ones who have to endure this awful illness just for a few days . End of rant 😡😢
Feel like giving up : We went to see a... - Multiple System A...
Feel like giving up
I am so sorry to read this. I felt the same 2 years ago when after fighting for months to get mum seen by her consultant (had looked after her for 7 years following PD diagnosis) - he almost immediately said it was now MSA and said there was nothing he could do - just implied I'd contact the MSA Trust and said there were no real treatment options and gave us a prescription for something that caused massive issues for mum. No advice, no support.I called in desperation days later and he left a voicemail saying again there was nothing he could do.
I have never felt so totally alone in my life. I did though then use the anger and frustration to get the support we needed, I called the neuro specialist nursing team, the GP, the MSA Trust, our local hospice (they gave ME so much support - all free, no battle and was invaluable).
One of the best things that happened was mum ending moving area - we then ended up with a consultant who was a specialist in MSA, since then with her support numerous things have been changed, drugs tweeked etc.
But like you the pandemic hit very hard, sadly mum went into a nursing home as her needs were too much for us to manage in Sep 2019. So we've had to deal with restricted contact and even now 'thanks' to her home manager thinking she can make the rules up as she feels fit we still don't have anywhere near the amount of contact mum and us need. I fight on with that one.
But as I'm the only one with 'special status' to go into mum's room when I want or when she needs me - if I get covid it will affect things drastically. I am made to feel especially by my employer that I should be back in the office - given I'm in an area with very high infection rates I won't take the risk! Mum is also really struggling with a lot of symptoms that affect her behaviour and mental health so she needs my help and support!
It's so hard to get people to understand what living with this is like! I rant a lot and I don't apologise for it anymore - like you say they should try being in our shoes!
My advice would be to get some support for you if you can. You are not alone. Speak to your GP about a possible referral to another consultant. MSA Trust may be able to advise with where they are? When mum was first poorly I found a consultant and then asked my GP for a referral!
We're here and we understand
So sorry to read this. I am so sad that when you need compassion and understanding it is in very short supply. I really hope you might be able to be referred to another consultant or health professional who will give you more time and understanding.
Once we found a very understanding consultant at the hospice, we didn't feel so alone and had really good care from him. He was very responsive and we did not have to fight to get help as he organised many things for us. He had knowledge of MSA and understood the challenges dad and the family were having to deal with.
Sending you love and a big hug. xxx
Thank you for your reply x
Hello,
Sorry you didn't have a good experience, you both have enough to cope with and a bit more empathy would go a long way.
Like you, I would like to welcome them into our world for a day or so, they mean well but a lot of people just don't understand.
An awful lot of people have never heard of MSA and when I took L to A&E a few years ago the locum doctor hadn't either.
People say to me, "what do you get up to" and we say looking after each other.
I've no doubt you're doing a great job, you must remind yourself of that, we're all doing the best we can 
We all have good and bad days and I hope you both have more good ones to enjoy.
I had a good day not long ago, I took L to a garden centre (in her wheelchair) for a break, I was feeling a bit tired and as we passed a group of people an elderly lady grabbed my arm, looked straight at me and smiled as if she was saying " I know dear.....keep going "
It made my day, she just knew and must have had her own issues at some point.
Keep smiling if you can, we all understand 
Derek
Oh God, my husband has MSA too. I feel the same. Some days i am scared and have no idea what I'm going to do. I found that trip to the neurologist to be more emotional and traumatic, but most of all hopeless. My husband comes out frustrated and wonders what's the point!! I then spend my time remotivating and supporting him. Every day is like will I lose him today. We have three children between 11 and 16yrs. So I just try and think in the tomorrow. Maybe I'll give my self the luxury of talking about our next holiday. But most of all i try and keep going. Your message is soo reflective of all of our feelings. You just rant and get it out. We all just understand. Big hugs and carry on xx
Thank you for your reply , you really understand where I’m coming from . I’m so sorry for you and your family . It’s strange I always think of others and how heartbreaking this illness is . I never feel sorry for us though . I am on edge everyday too and I try so hard to keep Richard well and out of Hospital. I now I will never beat this but I’m damned if his journey is going to end one day sooner than it needs too . Sending good wishes to you all xx
I love that. You just have to keep going. You stay safe and well. Big hugs. X
I think planning your next holiday is possibly the most important thing you can do! ❤️
no excuses but doctors have been brought up to beleive they can cure people and it must be a terrible shock when they have accept that they can't. they can do a lot to help but they don't know what. It is not in their training to know where to go for advice on benefits or how to choose a good carer, what to look out for like aspiration pnuemonia or any of those things that DO help.
The MAS Trust does information for profesionals. You might be able to persuade himto take advantage of it
my husband had a consultant but we decided to go to an NHS clicnic attatched to nhs in Edgeware where they had a holistic approach , physio, speech ,diet etc all under one roof - much better
i cant remember exactly and it may not be there after so long but i can look it up if anyone is interested
unless he/she is very good it is not worth the hassle of travelling to a consultant if you can find it elsewhere
our local hospice, st francis inBerkhamsted was enormusly helpful although he was never an inpatient
So true Freda, I think a lot of doctors feel hopeless when confronted by this condition and pass this feeling onto us! There is a lot they could suggest as you have outlined which would give very practical support. It is often the allied health professionals such as Physios, Occupational Therapists and Speech Therapists who give the most help. If you can find a centre that has them all under the one roof, all the better!
Wow, what a common theme here of "being put out to grass" unfortunately we all know that this condition has no cure and it will only get worse and at a rate we do not know or an unknown route....Every time Sue went to the consultant she felt let down as she always hoped that he would say the diagnosis is wrong, or here is a magic pill and it will all go away.....but we all know this isn't happening yet... Doesn't stop us feeling let down though..... I also feel for the doctor as he is bound by oath to make us better and he can't.......all he can do is make sure we are safe , informed and comfortable.... That's where he then gets problems as he has to rely on external support for that.
All the other professionals then are giving us all the emotional support that we all need to cope with this, which is what we need.
Acceptance of the condition it's changes and inevitably are the hardest thing to do for us all as of course we really don't want to be here.
For all of us we must use every piece of help and information to make our lives as normal as possible.
Sue and I are now 12;years down this route and we are still here......we don't want to be, we would rather be visiting the world hand in hand, but we can't we do what we can....
We all nee to rant especially us carers as we are hit just as hard...
Be safe, live and love as much as you can... tomorrow may change again.
Paul
💟
Thank you for your reply , I think Sue is lucky to have you looking after her . I too have sent Richard in to Hospital with a full information pack but still errors have been made . I also do OBS each day and record ot all . I understand about the Drs and that it is very limited as to what can be done but there was little understanding , empathy or individuality . I don’t expect miracles as much as I would dearly love there to be . I wish you both all the best for the future . Take care of you as well x
You’re right in that not many folk get how hard this is and it’s like living in different worldsI loved Derek’s reply below
It’s so true
“People say to me, "what do you get up to" and we say looking after each other.”
Keep looking after each other
Much love
Like you, we used to invest HUGELY in the periodic appointment with C’s neurologist. We invariably left feeling completely flat.It took me a while to understand that, once you have an MSA diagnosis, the neurologist’s job is done: s/he can’t fix you (and clinicians struggle with that). At best, they are trying to figure how quickly the condition is progressing.
Best to build a team of support services: OT/SLT/Physio and Hospice.
I well remember asking our GP for a hospice referral. “Are you sure?” he asked. Well, no one else was showing any interest! Hospice were brilliant at “seeing the person” and ensuring I felt supported.
Sending love ❤️
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