MSA IN Scotland

[Lassie1331]

my husband was diagnosed 3 years ago but has not seen a neurologist or MSA nurse since, is this normal?

[Diane831]

The nurses at the MSA Trust don’t see patients but are always available for advice, I assume that you have joined the trust. If you haven’t been seen by a neurologist in that time I suggest that you email Katie Rigg who is the trust Nurse for Scotland and ask for her advice. Is your GP helpful? You could ask for a referral or why you haven’t been followed up.

msatrust.org.uk/about-us/st...

[Lassie1331 in reply to Diane831]

Thanks for that advice. We are 65 miles away from our nearest main hospital and my husband is unable to travel(partly unwilling) we have visits from GP on an intermittent basis. She just checks any other conditions as in chest infections etc.

[Diane831 in reply to Lassie1331]

Don’t forget that the MSA Trust also holds virtual Zoom support groups and so then you don’t need to travel. Covid had some benefits!

msatrust.org.uk/support-for...

[JJAJJ]

My husband was dx MSA Nov 2021. He spent 3 weeks in hospital and came home 10 times worse. (They neglected a burn he got when he fainted against a radiator which turned into a full bodied burn). Advice from the Dr of the Elderly (we haven’t got a dedicated Parkinson Doc nor a Neurologist) was to go home and learn to live with it. We have and from my perspective I can manage without them. I can’t manage without the help of the OT who is lovely and provides the necessary equipment to help me manage my husband.

[Lassie1331 in reply to JJAJJ]

Fortunately we have had no hospital stays and I’m of a similar opinion of just managing myself dipping into local facilities, equipment and adjustments to the house. Luckily I have great support from my family. Take care

[Upsetcarer]

hi my husband was diagnosed June 21 but had symptoms for a lot of years before this he has appointments every 4 mths either with the Parkinson’s nurse or consultant. Where in Scotland are you ? MSA nurse Katie has support groups in Glasgow and Ayrshire every other month which are great to attend and she will give you advice if you are registered with MSA trust you should receive emails about these groups but please contact Katie and get advice x

[Lassie1331 in reply to Upsetcarer]

We are in the Highlands and feel very isolated. As a carer I would like to chat to someone. My husband has given up and doesn’t want to get involved. Thanks for your answer.

[Upsetcarer in reply to Lassie1331]

Please phone or email Katie to get some support and advice her details are on the MSA trust site x

[thedjsupreme]

I would have thought months. I've had to arrange my own gym/physio also my main exercises these days is dog walking (I used to be a marathon runner)

[thedjsupreme]

I would say it's month's. I've had to arrange own gym/physio my main exercise these days os dog walking (I used to ne a marathon runner)

[diyducky]

Hi,

Not in my husbands experience. We’re in England but should be quite similar as all covered by the NHS.

My husband has seen all sorts of clinicians. Neurologist at least annually. Parkinson’s specialist nurse also annually.

He was diagnosed in December 2018. I have a folder to try and keep all the appointments and information organised.

If you’re not already on a waiting list to be seen by a Neurologist then maybe you could ask your GP to do a referral. Or contact the MSA trust to get a telephone consultation with one of their MSA specialist nurses.

Hope this helps.

Lorna

[Heronblue]

My husband was referred to neurology at the Anne Rowling Clinic, Royal Infirmary, Edinburgh. He saw a Professor annually (who failed to diagnose) was diagnosed in Spain and in our return saw a neurologist every 6 months. Lothian Health Board. Not sure what area you are in but I would say get on to them and sadly demand he is seen. In Neurology in Edinburgh there is a small team specialist ‘Parkinson’s’ nurses. They cover many neurological diseases and my husband was referred to them too, for advice. They knew about MSA and were helpful. Hope this helps.

[PTS1]

Hi. I was also diagnosed three years ago . I am in Southampton and see my neurologist once a year, except for this year which was cancelled the day before through illness and subsequently have a rescheduled appointment on 22nd November from 13th October.so three years is not good enough! The problem with this Illness is that it is totally underfunded, no cure and no treatment specifically for MSA. You must feel quite alone. My wife anx and I have/do at times! I'm am 62 and in the last couple of months had to start using a wheelchair or mobility scooter. Good luck!

[SamanthaMSAT Moderator Staff]

Hi PTS1,

Do get in touch with the MSA Trust nurse specialist Jill Lyons, who covers Southampton, she may be able to help with your appointments.

Her contact details are on the MSA Trust website:

msatrust.org.uk/support-for...

Kind regards,

Samantha. MSAT nurse.

[esj20]

Hi Lassie.

Personally I cannot heap praise enough on Katie Rigg. She along with a fellow MSA diagnosed friend ( you know who you are LC ) I wouldn’t have got through the start of my MSA journey. Luckily in the Scottish Borders wee have an amazing consultant and Parkinson’s nurse too.

Make use of the MSA trust and never stop asking for help or questions.

Best,

Alec

[Heronblue]

Hi, I am in Edinburgh which might not help with the Highlands. There is a ‘centre of excellence’ called The Anne Rowling Clinic based at the Edinburgh Royal Infirmary. They are heavily involved in MND, MS, Parkinson’s etc. They have ‘Parkinson’s’ nurses who know about MSA and the MSA Trust. They also have a very good Neurologist who knows about MSA, he was very helpful to my husband. You should ask your GP or ask for one of your GP Partners to get in touch with them for you. Not to be seen every 6 months but for advice to find a neurologist with knowledge of MSA nearer to you. Sadly I found I had to make the suggestions to my GP to get things moving & to ask for a Neurologist with an interest in movement disorders especially MSA. I had to basically demand my husband saw the right Neurologist. In the end the disease progresses but getting the support is helpful. Katie @ MSA Trust knows a lot about what’s on offer in Scotland. I had to fight in Edinburgh for help with a specialist neurologist with knowledge of MSA but they are out there & in the NHS.