Hello and welcome to the very exclusive PPMS club. No entrance fee or dress code.
I understand what it is like as I was in limbo for two years before finally being diagnosed with PPMS.
If you are unsure how to prepare for your MS nurse, I can suggest the following, although I have no idea how PPMS is affecting you, of course.
Write a list of the main issues which affect you and when, eg fatigue, bladder or balance problems. Are you able to walk and do you need a stick or some other device such as rollator? What times of the day are you most affected? She will be able to suggest ways to help you.
Do you require any adaptations to your house such as grab rails or raised toilet seats? Your MS nurse will be able to contact your OT service on your behalf, if required. I realise that the availability of services such as OT, continence and physiotherapy is a postcode lottery. I am lucky that all these services come under one group in my area, and they are all joined up. This may not be the case for you
Medication for PPMS is limited but it is a point worth raising. In my case I take Gabapentin for neuropathic pain down my right side. You could discuss supplements such as Vitamin D, B12 and Magnesium.
You could discuss any support you might require, either physical or emotional.
I am sure that once you start thinking about things and start writing them down, the list will suddenly snowball. Keep a pad handy and jot things down as they occur to you.
I find my MS nurse very helpful and supportive. She wrote a letter of support when I made my PIP application.
I hope this is of some help to you.