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MS nurse What to expect

I had my official diagnoses of progressive MS given to me on Tuesday, even though I had been told last year by my lovely consultant that he was 99% certain I had MS. So very relieved, I can now get on and deal with life without wondering what it is if it isn’t MS.

Consultant has said he would contact the MS nurse for me, so can you tell me what I can expect in that dept please?

My main issues are the fatigue and cog fog as I call it.

Consultant is also going to organise physio to make sure I keep my muscle strength going so I stay as mobile as long as possible.

Have to say I was very pleased with the help offered by the consultant.

Hi there, sorry you had to join this club but welcome

My first MS nurse was lovely, gutted that she retired. At our first meeting we chatted over symptoms etc. so if you have any questions or feel you need anything else support/medication wise, then your nurse could help. Mine also came to our house as I needed a 9-hole peg test for one of my meds.

At some point if you need it, you can ask about an O/T (occupational therapist), I’m sure your nurse can refer you if needed. The O/T that came to me sorted out a perching stool, a trolley, a step, a bath board and a support for around the loo. She was amazing, it was the first time my husband really opened up to anyone too, so I think it’s fair to say they’re very well trained and so supportive.

Glad your consultant is arranging physio for you, I had to ask for everything with mine! Oh and I was referred to a Neuro rehabilitation Dr. Again, he was very helpful with hints and tips, most suitable meds etc.

Oh and Orthotics (I think that’s what it’s called) that made me special insoles for my shoes. Rehab doc arranged that. Your nurse should be able to refer if needed.

I found emailing my nurse really helpful too of anything comes up you and you need to ask for help.

There’s so many thoughts probably rushing around your head right now, so write a list would be my best suggestion.

Sonia x

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Thank you Sonia :slight_smile: All that info is fantastic. I’ve had the symptom from the early 1990’s with things gradually getting worse, so my GP sent me for scans a couple of years ago and my consultant has been fantastic in working through everything with me. I knew last year for sure that’s what I had I just needed it confirmed so I can move on with life and focus on how to manage the fatigue and cog fog.

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Greetings. Seems like you’ve got this PPMS diagnosis sussed. Muscle strength is the key. Use it or lose it. Avoid groups of people, who have their agenda, to convince you to try the fake ventures. Keep it real. Terry

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