New to this..MSA versus ALS

[Schoolpatrollady]

My husband was diagnosed with MSA. Does MSA and ALS have the same symptoms?

[FredaE]

I don't know about ALS so I can't Help except to say that all these nasty things with initials are so hard to diagnose because they have so many symptoms in common that you MAY - or may not get. Usually time makes things clearer but in the mean time it is no fun living with uncertainty. Whatever it is - the best of luck

FredaE

[Diane831]

Hi. ALS or MND as we know it in the UK, is a different kind of disease and affects a different bit of the nervous system. MSA affects brain cells in particular areas of the brain. However as it affects the nervous system some symptoms are similar as time goes on and more people understand what ALS will do to you. My advice is though to just find out as much as you can about MSA and the range of symptoms that might occur, although every person with MSA is different and may not experience the same set of symptoms as anyone else. The MSA Trust in the UK have amazing information and there are other organisations in other countries with support. And there are a range of people on this forum with lots of experience who will offer support so ‘welcome’ to the forum no one wanted to be part of!

Best wishes to you and your husband.

Diane

[Schoolpatrollady in reply to Diane831]

My husband was diagnosed in January. I looked online and found this website and have been searching for information daily......we do have a good Neurologist, but only see her every 6 months. The reason I asked about ALS is because my husband was a veteran, they don’t recognize MSA for all kinds of help but they do recognize ALS. We live in the US. Because we are going to have to make adaptations to our home we are going to need help financially, so when I looked up the symptoms they sound so much alike.

[Diane831 in reply to Schoolpatrollady]

I think your US website is multiplesystematrophy.org/

It seems a bit unfair if ALS is recognised but MSA isn’t. I think the length of life prognosis is shorter for ALS but it doesn’t alter the fact that MSA is life altering and life limiting and progressive and many alterations of your lives and home will be required in order to Manage and enjoy life.

Best wishes. Diane

[Hidden in reply to Schoolpatrollady]

As A UK veteran I wish you and your husband well. Also wish none of us had to deal with this awful condition. I was diagnosed over a year ago my poor family are still coming to terms with it. Per Ardua ad Astra.

[Yanno]

Hello, I would really endorse the previous advice about looking at the MSA Trust website (msatrust.org.uk) as there is a host of information on it. If you are outside of the UK the MSA Trust have an email address where you can write to for advice etc.

You are very welcome in this group albeit as always I wish you didn't need to join. If you are new to MSA - you don't say when your husband was diagnosed - you will find that many health professionals are not aware of the condition and will often confuse it with others - in our case MS seem to be the most mentioned! If you look through some of the past posts, you will see some excellent advice about dealing with health professionals.

Also, do feel free to ask any questions you may have as there are a number of people within the Group very willing to support in any way possible.

Take care, Ian

[Alisonleicssupport]

There is a specific group which is for veterans with Msa. Think it may be US based. Ask fro the Msa coalition.

[Janeyl]

As you are in the USA, the Veterans’ Association should be a great help to you in terms of advocacy, support and advice. America treats its veterans much better than the U.K, sadly.

[JillMSA Moderator Staff]

Hello.

MSA and ALS (or Motor Neurone Disease as it is known in the UK) are different conditions.

Please can I encourage you to join the MSA trust if in the UK

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

or the MSA Coalition in USA

multiplesystematrophy.org/

So you can speak to someone about the similarities and differences, and any

other questions you may have.

Jill Lyons MSA Trust Nurse Specialist