Diagnosed today … scared for the future!

[Bizzyissy]

I received the news that I was looking at MSA, not what I expected as Datscan was normal however everything points to it. Explains a lot of what I am coping with. Worse symptoms is the jerks and low blood pressure! Just not sure what is going to happen but I know I must keep positive.

[Yanno]

Hello Bizzy, welcome and as I always say, so sorry you have to be here. You have immediately said what my first bit of advice would be...be positive; live for today, however hard that is; and prepare for the future but don't worry about it...worry never helps.I'm sure you will have read the many posts on this forum and so you will be aware of the fantastic work of the MSA Trust that have been so supportive to so many like my wife Jackie as we travel on the MSA journey. Do spend some time looking at the information on their web site, however, don't be saddened by all the things that can happen with MSA. Yes, it's a dreadful, nasty condition but every symptom doesn't affect everyone. Each journey is slightly different.

Make the best of every day and concentrate on what you can now do...not what you used to be able to do.

Take care, Ian

[Bizzyissy in reply to Yanno]

Thank you Ian, spent the day feeling sorry for myself but I know need to move forward I have joined the MSA trust trying to limit the amount of Googling too! Issy

[Yanno in reply to Bizzyissy]

Hi Issy, well done on that. Back in 2015 when Jackie was diagnosed, I remember us well; having a cry, getting angry and then saying ‘we don’t want to spend our life like this, we will enjoy whatever time we have left together’. And that’s just what we’ve done over the last six years. Do also try and join a local MSA Trust support group if you can. Take care, Ian

[Precious68]

Hi Issy.

Just wanted to say hello. I’m new to the forum too. My family member was diagnosed with Parkinson’s about 7 years ago and finally amended to MSA last year.

As Ian says - MSA Trust is great resource. Your local NHS may not fully understand the condition so you will need to be well armed with information. There is lots of support available when you need it.

Do you have someone who can help you through - your family and friends will be so important in helping you on the journey. Always good if you have one or two advocates who will go in to battle when you don’t feel strong enough.

Stay positive - keep doing as much as you can as long as you can. Plan nice things too. It’s a condition that can take over but there is so much fun and joy to be had. The condition isn’t everything about who you are.

My family member has carried in laughing throughout her journey and I hope you will too.

L

Xxxx

[Bizzyissy in reply to Precious68]

Thank you so much for your kind words, I still feel numb & a bit alone as hspt still didn’t allow my husband to come in so took the news alone. I am going to be positive as I can be and as you say still laugh my way through life as much as I can I have a great family and hopefully once we all get to grips with it we can move forward together. Xx

[Jud11]

Hello BizzyI understand your fears so well. I have spent several sleepless nights since my husband was eventually diagnosed with MSA, but i now try to focus on living for the day and try to not look too far down the line.

My husband tries to keep as physically fit as he can, we are fortunate as the retirement village we have moved to has a gym, which he uses most days. He also has an excellent Neurological Physiotherapist who visits fortnightly, she has proved invaluable, we pay for this service.

As you will have read on all the other posts, not everyone experiences all the various symptoms.

I think it is very reassuring to know that when the time comes and we need further help and advice the MSA Trust is there to support.

I wish you all the best.

Judith

[chester2107]

hi izzy so sorry to hear your news , my dad was diagnosed at 79 with no previous illness, the doctor did say it may have been down to him very fit and active all of his life definitely stay as active as you can and try and be positive , do as much as you can

take care elaine xx