Update: Amazingly the GP has now changed his diagnosis , agreed he is CEV and sent his details to the vaccination centre. Unfortunately the vaccine centre doesn’t have any vaccines currently !!! But, we are getting there, gradually. Darlington seems to be bottom of the list for vaccines at the mo !
Apologies in advance about the long rant but sometimes I just get tired of having to fight the system because Mark has a rare disease.
Mark was diagnosed initially with Parkinson’s in early 2018 but that was quickly ‘upgraded’ to MSA.
At Christmas 2020 we discovered his GP still had him down as having Parkinson’s. We were alarmed it was not correct. This came on the back of them making mistakes with his prescription on 3 occasions - we officially complained on the 3rd time. When I queried his wrong diagnosis I was told that letters from his consultant state ‘probable MSA’ so they will not change his diagnosis. I have told them MSA cannot be definitively diagnosed until post mortem.
Is this why he never received a shielding letter and hasn’t heard anything about a vaccine? We are exhausted with the MSA struggle but his GP has been most unhelpful. They recently sent his sick note to the wrong patient too , just to complete the incompetence.
I am now on the GP practice patient group where I hope I can help - I hate that you have to be pushy and sharp elbowed to get anywhere with this disease. What about those that can’t/won’t or just are not able?
Keep on keeping on !
Clare
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Rafaina
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Hello Clare. You echo the words that Jackie and I have said so many times about those who "can't/won't or just are not able". For this reason we try and spread the word about MSA wherever we can.One thing you could try with your doctor, if you haven't already, is to ask the MSA Trust to send him their GP pack. I know our original doctor found it very useful.
I think to have a supportive doctor is essential. We have 'educated' our practice to the point now that they trust that we know what we're talking about. If we say the MSA Trust nurse has suggested this or that, they will prescribe with just a quick check that it makes sense.
So my final advice would be if things don't improve, change doctor if you can.
Thanks Ian. I just feel if we change GPs we will just have to start again from the beginning. I know there is a global pandemic, they are v busy etc etc but I think accurate prescribing and diagnosis must be pretty high up on their priorities.
I don’t think I realised there was a GP pack so I will look into this. I think like everyone we are fed up with lockdown whatever number this is and we feel like we have had minimal support from the GP and understanding of Mark’s condition and how he has been impacted.
I will pick myself up now and start afresh now I have had my rant. Thanks
Hi Rafaina, I can really understand your frustration. We found that most GPs have never heard of MSA. However, most health and social care professionals we encountered were only too happy to find out more about it and we were able to pass on information from the MSA trust. Our hope was that it would help future patients.
The more people who know about this complicated condition, the better. This extends to all those staff in hospitals as we found that we were always on edge if dad had to be admitted. It was so hard to get across that he had to have constant care as he was prone to trying to get out of bed and falling due to his lack of insight. We eventually persuaded them to get a bed sensor as they did not have the staff to adequately keep him safe. My heart goes out to families who are not able to visit and care for their loved ones during this crisis.
It was a relief when he was put under the care of a palliative team from the hospice. The consultant there had experience of caring for people with MSA. He was incredibly responsive and helpful.
I wonder if you could enquire about whether you could have the support of a service that better understands your husband's condition?
Hi Rafaina, I can understand your frustration. Tony’s GP at the time of diagnosis was very open and happy to receive the MSA pack. Unfortunately he has now retired and with the pandemic we have not met his replacement, although he has responded positively to suggestions from the neurologist. Initially Tony was not on the CEV list and did not receive a shielding letter. I phoned the surgery and explained how his MSA symptoms could compromise him if he caught the virus and they quickly ensured he was put on the list. Have you tried this approach? I understand it may feel like hitting a brick wall if they refuse to accept his diagnosis. Otherwise maybe your MSA nurse would be willing to talk to your GP to explain symptoms. I hope you are able to get the vaccine soon.
Thanks Anne. When we spoke with a GP at Xmas about a UTI he admitted he knew nothing about MSA and said it wasn’t his area of expertise. I understood that but had to explain it wasn’t mine either ! However I did my best but he kept on asking about the coding - which we didn’t know the relevance of. We haven’t seen a GP or the consultant for over a year- like most people. I will get the GP pack and hand it in if I can.
We have more info about MSA we are sending to the GP today - to see if we can get the vaccine sooner rather than later.
The quality and caring of GPs varies from absolutly marvellous to utterly shameful. If you have the latter please try to change as he/she is clearly not willing to listen. There have been GPs unwilling to accept any advice from our lovely and very knowlegeable nurse specialists because they are lower in the pecking order. Another said I don't know anything aboout this disease and I don't want to make a mistake so I shall do nothing. Another said I know nothing about it, just get this nurse specialist of yours to write down what she wants me to do and I will do it. We were lucky ours was just the opposite but you really need a good GP
One possibility is to contact your local hospice, Victor was under their care for many years.
, they are not just end of life. They have their own ways of relating to yourGP and may be able to help.
Thanks for the advice. We are in contact with the hospice as Mark goes each week. I will try again with the GP but might consider changing if we get nowhere.
it is very hard , it took about 2/3 years for my dad’s diagnosis of msa , luckily for us when he was , our GP had heard of it as his sister-in- law had it , but never really helped if he was admitted to hospital as they didnt seem to know very much assuming you have contacted the msa trust ?
keep going , it is rare , but i’ve met someone whose mother had it and a neighbour whose wife had it ,
i just post things everywhere to make people more aware , parkinson’s is well known , it’s very similar, so doctors should be more aware
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