Newbie alert

[Spaldingvillain]

So, good evening everyone, I'm Phil, 54 years young, recently diagnosed with msa-p after having symptoms for 3 years. I'm a carer by trade but that's about to stop. I have a question for you guys, I understand everyone's journey is different but in the early days, did anyone question the diagnosis?

I have days where I can wobble without aids and some days where I struggle to stand. And my speech as the day goes on is slurring worse by the hour.

Thanks

Phil

[Yanno]

Hello Phil,

I understand why you may question the diagnosis but I suppose the brutal question to respond to this is 'what's the benefit of a different diagnosis'? Sadly you may get classified as not this rare condition but another but equally sadly there is unlikely to be a silver bullet to solve your condition.

Jackie and I always worked on the basis of let's do all we can to alleviate the symptoms and enjoy life to the full now. Good days and bad days are common however if every day you do as much as you can, enjoying life, love and the company of others, any change in diagnosis will just be a label that really has little consequence to the life you need to enjoy now.

Take care, Ian

[Spaldingvillain in reply to Yanno]

Thanks Ian, I appreciate the advice.Phil

[Paul_and_Sue_Wood]

Phil

Hi and welcome to our forum where you can learn so much from fellow travellers along this changing road.

Yes everyone challenges the condition at some point as they hope it's something else which is natural and it's healthy to question because that's how you learn more.

As a carer you've sent people who challenge and adapt and those that just give up. The key to longer life with MSA is challenging, adapting and as Ian says enjoy everything you can do now for as long as you can.

Talk to the team as MSA trust about financial, medical and physical support which you will need on your journey.

Take care and we are always here.

Paul - Sue

[Spaldingvillain]

Thank you for the welcome and, like Ian, the good advice, we've just got to get our heads around this and make some necessary adjustments. It's some kind of comfort knowing we're not alone on this horrible journey .

Phil

[Lincsoldbird]

Hi Phil,

My husband was diagnosed with msa-p last year after being diagnosed with Parkinsons 2 years earlier.

He can have a string of weeks where nothing really changes and then he can have a period where every day is a bad day. We have learned as the others have said to enjoy the good times.

You will find everyone's symptoms are all very different too.

We felt lost and a little bit scared as it is such a little known disease, but found this forum and also the MSA Trust website which is most helpful.

Get in touch with the MSA nurse that covers your area, they are there to help you.

Take care.

Mel.

[Spaldingvillain]

Many thanks and, again, great advice. This forum is a real life saver.Phil

[SophieCat55]

Hi Phil, so sorry to hear this but this illness is so very sad and like yourself my partner who was diagnosed with MSA unfortunately had symptoms for years and was diagnosed with Parkinson’s 2017 and then MSA 2022 I know everyone is different, so enjoy life while you can for as long as you can. Wishing you all the best and take care 😊😘

[Spaldingvillain in reply to SophieCat55]

Many thanks for the advice

[Spaldingvillain in reply to SophieCat55]

Sorry to hear about your partner but its good advice, just getting a handle on this disease and taking each day as it comes. Phil

[SophieCat55 in reply to Spaldingvillain]

You’re very welcome Phil wishing you all the best.

[esj20]

Hi Phil

I’m 53 and diagnosed 2021 but I had symptoms since 2018.

Sorry you’ve found you way here but glad you have as this group is great support.

If you haven’t contact the MSA trust as their help is invaluable.

Wishing you well

Alec

[Spaldingvillain]

Hi, sorry to hear about your diagnosis, at least we're not going through this alone.I've contacted the Trust for help and advice on moving forward, I'll see what they come up with.

Thanks for the advice and I wish you well

Phil

[Monkeyfeet1]

hi Phil!

I’m 54 too! I think it’s natural to question the diagnosis but, personally, it helped m m e when I accepted it.

I used to be a teacher.

Try to adapt and contact the MSA Trust. Sending love. Xx

[Spaldingvillain]

Thanks for the advice, sorry you're going through it, at least we're not alone. I'm learning to adapt, slowly, but getting there. The trust have been excellent with their advice. I used to be a carer and the worst thing for me is seeing someone much older than me asking me if I need any help. I don't know whether that's arrogant of me or I'm just being a stubborn young manPhil xxx

[Monkeyfeet1 in reply to Spaldingvillain]

I understand that entirely. Keep fighting! And being stubborn. X