Another newbie

[LynneK68]

Hi everyone!

I’m a 49yo wife and mother, still trying to work by it gets harder day by day. I was diagnosed 18 months ago with Parkinson’s but this was changed to MSA in December. Is it really as scary as everything I read 😏🤪

[PNIAuthor60]

Were you ever told at the time of diagnosis what cemented the surety that it was MSA? I ask because my 37 year old son was diagnosed with early onset about 8 months ago but he is deteriorating too rapidly for it to be Parkinson's. How was your diagnosis reached may I ask?

[LynneK68 in reply to PNIAuthor60]

Hi. I originally had the same diagnosis but didn’t respond enough to treatment So I had a brain MRI, which they compared to the previous one the year before. It was what they fthat and symptoms I was also referred to and saw an MSA specïalist

[PNIAuthor60 in reply to LynneK68]

Thanks LynneK68!

[JanetGarrettN in reply to LynneK68]

I am in this group supporting in gathering information for my 74 year old mom who was misdiagnosed with Parkinson's and then read diagnosed with MSA. Her situation is the same as yours here reported. After about 2 years under the Parkinson's DX not responding to the various medications, I started looking we were referred to a movement specialist who is wonderful and the new MSA diagnosis was given. July this year began her fourth year into this. She is about 20 years post average onset age so it is moving fairly quickly.

[FredaE in reply to JanetGarrettN]

As always Yanno and Hellebelle are talking sense.

All the figures for MSA are "averages" . There is such variation between patients

Until comparatively recently any thing starting before about 60 was not thought to be MSA. Like Parkinsons which used to be thought of as an old person's disease. and now comes as early or late onset. it is clear that this is happening with MSA as well

On the face of it, the younger you get it the more awful it is for you. It does seem that early onset often means the patient has a more positive attitude. There is none of the "Oh well I've had a good life and now its over" resignation that often comes with age. The mind set is so different that Parkinsons have a separate organisation called Young Parkinson and members may have a lot they can acheive in spite of their early onset.

After all, MSA's Sarah Mathieson who set up the MSATrust, because there was absolutely no help to be had, was young and created one of the leading support organisations in the world. In the early days it was called after her and without her drive and hard work in he UK and world wide would be much less able to cope.

So yes it is a scary idsease but don't despair. Life is not over yet. You still have options

FredaE

[LynneK68 in reply to FredaE]

Thank you, that’s the most sense I’ve heard 🤗😍

[Yanno]

Hello Lynne. I am so sorry that you have this diagnosis but you are very welcome to this group which I hope you will find supportive. When Jackie was diagnosed we went through the sad stage, not believing what we had been told and yet knowing it was true. In her case there was a tell tale hot cross bun pattern on her MRI.

We then set out to live each day to the full, refusing to give in to the beast of MSA, and enjoying life as much as possible. Jackie was younger than some and so my heart goes out to you getting this diagnosis so young.

I trust you have been in contact with the MSA Trust; if not I would strongly recommend you do as they have been a huge source of information and support.

Please use this community to ask any questions you may have, we have found it to be a fantastic place to exchange ideas and get the support of others in the same situation as you.

Take care, Ian

[LynneK68 in reply to Yanno]

Thanks it helps knowing you are not alone. The MSA website is excellent 😊

[Hellebelle]

Hi, it is hard to answer your question as although there seems to be common symptoms there is so much variation in how people progress through the condition. All I can say is that my dad who has MSA has been helped enormously by his MSA consultant and all the wonderful health professionals who are supporting his needs. It helps if you can educate those around you, including the GP who have usually never heard of it. There are some good information sheets on this website. Also, the MSA specialist nurses also available through this site are really knowledgeable and helpful. Be really kind to yourself. It is hard for those around you to understand what you are going through but once they have more knowledge and insight they will help all they can. We do lots of normal things with my dad and try to make sure he always has something to look forward to, but his favourite thing in the world is if we pop in for a chat and a coffee. Please keep in touch with this support group, I have found it really helpful and comforting. Love to you and your family. Helen xx

[Marie_14]

Lynne I am so sorry that you have been diagnosed with MSA and so young too. You know I think all progressive neurological diseases are scary. Yet most of the population will end up getting one of them during their lifetime?

I also don't believe they are as rare as we are told. So many people are told they have Parkinson's and then years later told they have something else.

I firmly believe this is one of the reasons for the so called rareness of these conditions. How many are never diagnosed with anything, because they die of something totally unrelated, or have an accident and die?

I joined the PSP site initially as my husband was told that's what he had with signs of MSA. Anyway after a few weeks on there I realised it wasn't as rare as we had been told. If it was why were so many people joining the site? Remember a lot are only the people who chance upon it by accident too? Some have been told about it but so many haven't.

Then the MSA site came into action and I joined this site too because I honestly have no idea if my husband had MSA or PSP or a combination of the two.

I didn't ask for PSP to go on his death certificate as MSA was his last diagnosis a month before he died and I doubt they would have put PSP on because of that.

There is a lot of crossover between both conditions it seems to me although there are differences too. Either way I am glad MSA went on his death certificate as we need all these conditions recognised?

Read the posts on the PSP site too as I think both sites are a great help.

If you drive please be careful. That was one of the first things I noticed was wrong with my husband. He went from being a really careful driver to driving very oddly. Oh and breaking things was another one! He had always been clumsy so I thought he was just getting worse.

You take care of yourself Lynne and if working gets too much just be kind to yourself. You are going to need rest and your job sounds busy and stressful. Have you got family to support you?

Marie x