Recent PPMS diagnosis - any advice?

This is my first post and was hoping to get some advice please.
I was diagnosed late April 2022 with MS so am going through the process of getting help and support which will be very welcome but in the meantime can anyone suggest ways to minimise the feeling of being “spaced out”?
Thanks guys


Hang in there @Ianmian. I am yet to be diagnosed so limited on what I can offer in the way of support. That said this is a great place to start, you will definitely get the support you need. Maybe in time I can add something more relevant. Until then I will keep reading your posts, take care.

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Thank you Rogue.
I just need to be patient until I see my neurologist for the first time in June but patience is not one of my strong points :joy::joy:

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Sorry to hear that you’ve joined the club :persevere:

I’m a year ahead of you, being diagnosed Feb’21. It’s a lot to take on board.

We all have our own stories and with Progressive MS, the stories are different to RRMS. For a start, the prognosis is more depressing and disease progression tends to be more aggressive than RR. DMT’s are only partially successful too. The best we can be offered is a medication which in a % of people might show a subjective slowing in disease progression.

For me, I had been misdiagnosed for 8 or 9 years. For that time, although mobility was reducing I thought I was one operation away from getting much of my mobility back, only to find out that this is as good as it gets and it was going to get worse. I’m a 59 yo man, married with kids 26-10.

What’s your story? If your experience has any similarities to mine, that “spaced” feeling you describe could be a form of stress as you come to terms with the life-changing implications of your diagnosis. In my experience, you will want to progress your consultations, diagnoses and provision of medication much faster than “the system” is inclined to move. RR represents 85%+ of MS sufferers, is more slow-burning & more treatable than progressive and the provision of care is more geared around RR timescales which can be incompatible with the speed of PPMS.

You’re in the right place for asking for advice and second-guessing the information your MS Team see fit to share with you…