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Newly Diagnosed PPMS and first MS Nurse Visit

Hi everyone - so I was finally diagnosed approx 3 weeks ago after 3 years of limboland and am straight into the PPMS category. I have my first MS nurse visit on Friday and was just wondering what kind of things she will go through and what questions I should ask as she told me to write a list!!! Quite frankly i haven’t a clue!!!

Thanks xxx

Hi, sorry to hear about your diagnosis but welcome

Yes, write a list of symptoms & any questions you have. My MS nurse is a star, I email or text mine now as she’ll fax my surgery if these’s any meds I need.

Good luck, I hope your nurse is as lovely as mine’s been, it really helps to know there’s support there if it’s needed. I’m trying to access my pension benefits, I put my nurse’s contact details on the form and she got my consultant to write a report to the pension company. I recently had to fill in some PIP forms and a copy of that report was helpful in confirming my current state of health.

Good luck

Sonia x

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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.

Best wishes

Alun

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Hi and welcome to the group. The advice you’ve been given is good, I’ve not much I can add except to just relax. Remember that she specialises in ms so should understand the illness and limitations it causes but although most of us here have PPMS we all have different combinations of symptoms. I think many of us suffer from some of the more common ones such as fatigue and balance issues but not necessarily all the time.

The main reason for their initial meeting is to introduce themselves, assess that you’re getting the appropriate referrals eg to the physio, Occupational Therapist, or other service you may need. The most important thing for you to do is ensure you have her contact details. We’re all different in that some people like to phone their nurses and discuss whatever is bothering them, some like myself prefer to e mail them, especially if it’s not urgent. These nurse can feel like a lifeline when things are bothering you. The forum is another resource that can be very helpful. The people here actually live with the illness and can give you advice that you’ll find in no book or pamphlet.

Please don’t stress about this visit, if your nurse is anything like mine you’ll feel even more at ease knowing she/he is there and available. Take care

Cath x

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thank you everyone - I can see you guys are going to prove to be a lifeline!

One more question if I may - how often do you see your neurologist now - or is your care led by your MS nurse?

thanks and hope you all have a good day

xx

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Hi

Welcome to our “gang” lots of lovely friendly people on the forum with a wealth of knowledge and experience, always willing to offer advice.

It was a long time ago I was diagnosed, so I don’t see the neuro anymore (unless I want to) but initially I seen him every 4 - 6 months, then every 12 months, but there seemed little point to continue, as there was nothing he could offer me.

The MS nurse is a total different kettle of fish, you can ask them anything about symptoms or advice you need, they can refer you to the OT or email your GP about medication etc, mine has been so helpful, hopefully you will find the same.

Look forward to seeing you on the forum.

Pam x

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My Neuro prefers to see us when we have a problem but if I haven’t seen him within 12 months I get an appointment sent through. I e mail my ms nurse if I have any questions and she’ll get me in to see the Neuro if necessary but usually I only need an answer. I find the people on here usually have good advice with symptom management.

I think I saw him a bit more often in the beginning but we agreed on an annual visit unless something cropped up. Fortunately I seem to be progressing slowly so this may change as time goes on.

Cath x

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thank you - think i am bit more prepared now. MS nurse due at 3pm and my husband is coming home from work as he wants to be there too - see you on the other side!!!

Hi tinkerbellanoodle and welcome, it’s a club I’m sure none of us really wanted to be part of, but now you are here we are a friendly lot, each one of us can help in some way, I personally started writing my experience in a blog last year, it helps me and has helped others so if you want to take a look at some point do, it’s got useful information and humours tails, here’s the site details. http://www.amazon-lady.com and good luck with your nurse, they are also a great source of knowledge and give out drugs, ha ha. Regards Deborah

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