Possible MSA diagnosis?

My husband was diagnosed at 45 with Parkinson's, that was 4 years ago. Over the last 6 months his walking and speech has become more affected. The last 4 weeks significantly more so including problems with his bladder and constipation. Some swallowing problems but nothing major. I have read about MSA and his symptoms tick quite a few of the MSA boxes but no one was listening. We paid privately to see a neurologist (his normal NHS appointment isn't till October, the previous appointment being February) he spent an hour doing physical tests, chatting etc and said you have severe Parkinson's.

After trying to take his life 11 days ago he is now on a neurology ward and has been told it is probably MSA. He is currently on 3 days of anti sickness tablets and will then be on Apomorphine for 3 days to see whether this helps his symptoms. Has anyone else tried Apomorphine?

He has been on a number of Parkinson's medications lastly being Sinimet but nothing relieved him.

Grateful for any insights into MSA or experiences in caring for someone with it.

7 Replies

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  • Hello Jem. I am so sorry that you are going through what you are, it must be so difficult when your husband is so young. My wife was diagnosed at 60 having previously being dx as suffering from a stroke.

    My most immediate advice is to contact the MSA Trust (www.msatrust.org.uk) as they have a wealth of advice on their web site. The fact you mention the NHS suggests you are in the UK and the Trust have four nurses who cover the country and are a fantastic resource and source of help. We live in Worcestershire and our 'local' nurse helped considerably with advice on medication etc.

    One of the things we have now grown used to is that most health professionals, including neurologists, don't have any experience of MSA due to it being a fairly rare condition. We have a standard start to any conversation with health advisors which is "I am sure you haven't heard of Multiple Systems Atrophy as most health professionals haven't either. Even our neurologist has only seen a handful of cases...."

    We are lucky that Jax does respond slightly to siminet but you will find there is no magic potion that will solve all issues. It's all about doing what little you can to manage the symptoms. I know it's difficult but we firmly believe that a positive attitude also helps things. We are "wine glass half full" people which helps and, sadly, it is all about making the best of a very poor set of cards.

    Hopefully you will find support within this community, we are only a few but we all share a common desire to manage the best we can this beast of MSA.

    Good luck, and please ask should we be able to help or give advice on anything.

    Take care, Ian

  • Jem

    MSA is a long changing journey for you both and everyone's symptoms are different.

    I would absolutely agree with Ian's comments in contacting the MSA trust to give you both help and advice.

    Also speak to local hospices to give you both support.

    Drugs are taken to alleviate symptoms and everyone symptoms vary in type and severity so unfortunately it's trial and error.

    Good luck and the one thing I would say is ask ask ask...

    Paul

  • All sound advice which I will reinforce. Get as much support as you can. Speech therapy physiology etc. A hospice, not just for end of life, will also help with palliative advice and care for any life limiting conditions. Check out the Trust as there are over 30 support groups around the country now. You will meet people going through the same as yourselves and who may have found solutions temporarily for your issues.

    I run the East Midlands group. I became involved when my Mum was dx. Herself treated for Parkinson's for 3 yrs. I constantly try to improve awareness of the disease.

    Take care x

    Alison

  • So sorry to hear of your husband's journey, especially as he is so young. Although my husband is generally a positive man, he is taking fluoxetine to help maintain his emotional stability. It sounds as if your husband could also do with some help in this area. There is quite enough to worry you without you being anxious about his mental health. The support from forums is fantastic. We are unable to get to support groups because of their times - I still have a school run - but when we did attend, twice, it was really good.

  • Hi Jem. As others have said, every journey is different but so sad that your husband is so young. My husband didn't start with the Parkinsons symptoms, he was the Cerebellar wobbly type, so we didn't have that horrible time of the is it/isn't it and trying all the medications. You have so much to deal with right now so the MSA nurses are definitely an amazing resource. You aren't alone, however much it feels that way, there are people who understand, and I guess having the MSA label earlier wouldn't change the stage you are at only your understanding of what is going on in his brain and body. I haven't heard of apomorphine so can't help there.

    Our thoughts are with you.

    Diane and Geoff

  • Hi Jem,

    Please contact us and we'll put you in touch with an MSA Nurse Specialist who can help you.

    support@msatrust.org.uk / 0333 323 4591

    All the best,

    Louise

    MSA Trust

  • I was told at 50 I had this I am on own as husband died age 52 of heart attack married 30 years used to work in mental health so if you need help please ask I am 52 now teresa x

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