New to all this.

[BCFC100]

After initially being diagnosed with Parkinson’s disease a few months ago, today I’ve been diagnosed with MSA.

[Ruffner]

Hello BCFC100,

We are relatively new to this also, although I have been diagnosed with PD for eleven years and my husband was diagnosed with probable MSA a year ago. We have found the posts and information on this website to be a valuable resource (more so than our semi-annual visits to the neurologist).

My husband is in early stage and is still mobile, though very slow. His biggest problem is blood pressure fluctuations.

How are you doing mentally and physically? I assume you have MSA-P - do PD medications help with those symptoms? If you feel like it, please tell us a bit about yourself.

Kind regards, Ruffner

[BCFC100 in reply to Ruffner]

Hi Ruffner,

Thank you for your kind welcome.

I’m Mark, from Birmingham. Been a bit hectic the couple of days with the new diagnosis, although I’d come to terms with the feeling that my condition was more than PD, it’s hit my family hard & that has had a knock-on effect.

Not to sure if the consultant stated it to be MSA-P or MSA-C? I do know that after reading the symptoms of MSA on the NHS website I tick all the boxes 😌

The consultant has increased the medication dose to see if that will help but I don’t think it will.

We’re looking forward and the wife is already planning things for the future, so no time for negative thoughts👍

Hope you & your husband are OK and find a happy path though this.

Best regards

Mark

[ReverendBadger]

Hi, and welcome to the MSA forum. Although this is a club nobody plans to join you will find you are in good company. There is lots of experience and knowledge about MSA you can tap into so do feel free to ask any questions about anything.

I had a Parkinson's diagnosis first too and MSA was only suspected 12 weeks ago. I found joining the MSA Trust very helpful and some professional counselling to deal with the "shock" worked for me.

How are you feeeling about things ? Is there anything you want to ask us ?

Regards,

Ken

[BCFC100 in reply to ReverendBadger]

Hi Ken,

Thank you for your kind welcome.

I was initially diagnosed with PD in May. This was through a private consultant who in fairness was not a PD specialist. It was only after I’d got an appointment back in the NHS with a PD specialist consultant that the MSA was diagnosed. Within 5 minutes of seeing me he stated it was clearly MSA. I’d suspected before the diagnosis that it was more than PD so didn’t come too much of a shock. I’m lucky that I have a good supporting family around me & we’re (wife 😀)busy planning the future.

I don’t know what the future will bring, I know there will be some pain but I’m determined to do as much as i can.

Hope you’re OK

Best regards

Mark

[Paul_and_Sue_Wood]

Hi

Welcome and sorry you are here as we would all prefer not to have this condition.

The group is here to rant, moan, ask, question, help and advise. We are all at different times on the same journey and have different experiences.

If you haven't already visit the MSA trust web site as it's packed with help and information.

We look forward to hearing off you.

BCFC Birmingham?

Regards

Paul

[binnyrox]

Dear BCFC100

We are here to support you in any way we canIt’s not a place anyone wants to be but we definitely get by better ‘with a little help from our friends’

Take care and kindest regards

BR

[BCFC100 in reply to binnyrox]

Hi BR,

Thank you for your warm welcome.

Only been on the site for a few days but feel so at home with everyone.

The site is full of information that I’ve only had a small change to look at. I’m sure I’ve got a lot of reading to do 😀

Hope you’re OK

Best regards

Mark

[Gill-C]

Sounds like you are still in shock. Others who have been around longer than me will know best, but I suspect it lasts a long time.

Certainly for me it comes in waves and, being still quite physically functional (relatively speaking), I can indulge in denial some of the time. (PD diagnosis Dec 2021, MSA diagnosis June 2022).

I can only offer my own mantra, which is to concentrate on living rather than looking back with regret or forward with trepidation.

There’s lots of super supportive and wise people on this forum, so you have come to the right place.

[sittingontheprom]

Similar to my wife Julia BCFC100 - we saw 3 different Neurologists over several months with no definite diagnosis !!

We decided to see a private one as we had heard good things about him - we walked into his office sat down and he said to Julia " You have MSA-P and there is no cure "

He went through all the reasons why as he watched her walk in !! He added Julia to his NHS list to save us money , we see him and his team every 6 months but MSA is now taking hold and nothing much really to stop it.

😌😞💔