An update on Martin following his first, rather bizarre, appointment with the neurologist who was a locum. The neurologist put all his questions about symptoms to me rather than Martin which I found very strange. I thought I might have to chip in where M couldn’t remember but I didn’t expect that and felt very uncomfortable for M. Having had 3 bad falls in the previous 24 hours we decided to use the wheelchair as we weren’t sure how far it would be to walk. The neurologist got M onto the bench, did a couple reflex tests on his knees, then did a couple of peripheral eye tests and said it was MSA. He didn’t say anything else other than we’ll be seeing each other again, big smile , and out you go. I think we were both in shock, not with it being MSA , but with the whole speed, no discussion, out.
Thank heavens for the MSA trust, Jill Lyons, the Occupational therapist, physiotherapist, falls nurse, GP, and other organisations like AgeUk and Care and Repair who have been really helpful in getting to grips with the every day reality.
Next time I will be better prepared to meet the neurologist and hopefully get one I can understand better, masks definitely don’t help the language barriers!
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Floosie5uk
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What a shame you had this experience. My first judgement of a good health professional is one who talks to Jackie rather than me as the carer. Jax usually starts a meeting by saying that I will talk for her as she finds it difficult but the good ones carry on addressing Jackie even if I do the speaking. I think one of the things we all learn with MSA is that we have to become mini-professionals ourselves and question and absorb information all the while.
As you say, we are well blessed here in the UK with the MSA Trust.
Definitely. You have to put together a team from whatever resources are available locally and unless you are very lucky and get one with a good local support network, don't stress too much about who has the best neurologist.
I know that Yanno knows all this but I am now talking to anyone who is knew to a rare disease. To do this you need the best information you can get and the MSA Trust provides that, and you will need to work hard to be accepted as part of the team rather than just the patients accompaniment.
With long gaps between consultations you are the one who really knows what is going on. Keep records of everything, and never accept any information you don't fully understand - " Sorry I need you to explain that to me please., " write it down and read it back to the medical person to check you have got it right. and don't let anyone one rush you.
There is no such thing as a silly question except the one you didn't ask. If you are unlucky enough to get someone who makes you feel stupid for asking don't be apologetic.. "I am new to this and I am finding it difficult so I need your help to understand all I need to know" or something like that.
It is good for specialists of all sorts to give simple explanations of complicated subjects. If you have not understood it is because it needs a different way of explaining it.
Thanks Ian, that’s a brilliant way to start a meeting, we will try that nexttime!
That must have been difficult and rather a shock for you. My Dad has MSA and is in the more advanced stages. I have read just about every documentation going to understand this condition for myself. Because this is rare, I feel that I am educating healthcare professionals as and when needed. Knowledge for me, has helped me to understand and support my dad in the right way. I wish you all the best and send you my good wishes.
Thanks MSA-1 , we’d strongly suspected he has MSA and this site with everyone’s info and the MSA Trust has helped us to understand more. I just should have been better prepared for all eventualities. Next time.
i must say when my dad went to the hospital, the doctor just said he had MSA all my dad heard was , there wasn’t any cure and it was vary rare , he gave my mum and dad leaflets on it , my mum then looked up what it was in the internet , all very confusing for a couple of 79 year olds !
luckily their GP knew a bit as his sister-in- law had it
i contacted the msa trust , they were amazing , sadly he has passed now
but i am raising money for the trust and to make more people aware
Our first experience with the neurologist went almost exactly as you say it did for you. After we left, basically in shock at how i felt we were treated, I called the office to say how disappointed I was in the manner that it was addressed. After that, our neurologist was very attentive to us, he gave us so much information and basically treated us how we would expect to be treated. I think communication is so important, and sometimes (not for the lack of education) but the empathy that our doctor shows is so important. Before you give up on your neurologist, i think you need to express how you felt with him/her speaking to you and not your spouse. It worked for us and i'm very happy with our neurologist now. It takes education on both parties to understand how to deal with this disease. Of course, if you express your concerns and nothing changes, time to find another neurologist
My brother in law was desperate to have a second opinion for my sister and so we went to London to a consultant. It was a massive trip for my sister, who had MSA, to take and the expense was horrendous - and we were treated in exactly the same way as you and Martin were treated. This consultant made no effort to hide that he was in a rush and he did a couple of rapid tests and said yes , it's MSA and off he went. I was so angry that I couldn't speak and so I missed the chance to call him out. The advice here that you've been given, on how to approach your consultant is invaluable. And as you say, thank goodness for this site, these good people and the MSA Trust
it was the same for us - diagnosis dealt out, told to google it and the consultant we'd been seeing for 7 years just looked distraught. Mum had had a PD diagnosis first & then deteriorated very fast. We were just left hanging, called later in the week as mum was really struggling and had had an A&E visit and was just told there was nothing he could do. We've now moved and mum has a consultant who's a MSA expert but even the thought of those early days makes me shiver. I became an expert very quickly and got the support network in place but it was driven by me....it shouldn't be this way.
So sad that this is common and I guess it’ll be across all problems not just MSA. We’d get sacked in our jobs if we behaved like this! Hence why we all need this forum for support. Thank you for responding. Sue
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