Frequency of MS Nurse appointments

Hello everyone!

I’m curious to know how often you all see your MS nurse. I have just received another appointment notification to see mine next month, when I only saw her in mid December.

I’m yet to select a treatment, so I presume someone newly (ish) diagnosed will naturally see their MS nurse more often, but I was still surprised to get another appointment so soon. It will mean that I will have seen her twice in nine weeks.

So I’m just curious how many times you see your nurse on average?

C x

Annually!

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Yes same here, new to RRMS and had appointment end December, another booked February for medicine education and another in April for symptoms management. I think it’s quite comforting to know they are there throughout the start of the journey.

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We recently joined the same club then! Thanks for sharing. I have no idea what is normal, and I had prepared myself for long waits, so it’s really useful to hear other people’s experiences. It looks we are on the same bus so to speak. Good luck! x

Sadly yes, the same unwanted club! I hope it carries on being this organized, probably the same as you but really want to start a DMT as soon as possible. Good luck on your journey as well

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Hiya chezza78,

I was diagnosed in December 2023 and I’ve only seen my MS nurse once.
I’m due to see them again next week follow the hospitals protocol for kesimpta, so I will be reviewed every 3 months.
Have you started a DMT as some medications need certain checks to be done on a regular basis.

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Hey animali! No I haven’t started a DMT yet. My neuro wanted to do another MRI first as my symptoms suggest the MS is quite active at the moment. I have the MRI in a couple of weeks followed by another appointment with my neuro to discuss treatment. I assumed I would only see my MS nurse after all that happened, but this new appointment is actually in the same week as the MRI, so there’s no significant difference to when I saw her in December. Perhaps she’s been asked to start preparing me for treatment choices or something like that.

Hiya Chezza 78

I’m surprised they haven’t started you on a DMT if it’s highly active! The same happened to me and I had 4 relapses, changed neurologist and started a high efficiency DMT . My first neurologist doesn’t prescribe DMT, then said it was mild, even though I have a brain stem lesion, and since diagnosis I can only feel 25% of my head, face. I really hope they get you sorted on a DMT soon!
Maybe the MRI is the new baseline before treatment, I don’t know but sometimes you have to keep pushing.

It’s all so confusing. You’re right, the MRI is to get a baseline, although it will be my third MRI in six months, so it feels a bit unnecessary (but what do I know!)

My neuro ordered the MRI in Nov, and he said that he was hoping to get it done before Christmas, so that I can start DMT Jan/Feb. So there was a sense of urgency, but clearly not urgent enough to get my MRI expedited or indeed skip it and just crack on with getting me started on DMT.

My MS nurse has been chasing radiology, apparently my neuro had requested the MRI as urgent, but when they reviewed it they overruled that and downgraded it to routine. How they have the right to interfere with the wishes of a neurologist is beyond me!

So I now have this weird situation where I’m in limbo land again. But this is much worse than the pre diagnosis limbo, simply because I know I should have started DMT already.

I’m going to call my MS nurse tomorrow and ask her why this new appointment with her has come through, because I guess she still won’t be able to discuss treatment with me and we did symptom management last time.

My husband has a hunch that perhaps my neuro and MS nurse have spoken behind the scenes and decided not to wait for radiology, so she has booked me in again quickly to actually get the DMT rolling.

But who knows!

C x

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Hi chezza,

My 2nd neurologist let me start a DMT after seeing my MRI from December 2023, and I started kesimpta in October then 6 weeks after starting treatment I had the baseline MRI completed. Since diagnosis I now walk with a stick, wear a foot brace, Pulsatile tinnitus, SVT and various food and medication allergies. I don’t want you to be in the same boat I was! Advocate for yourself, and hopefully you’ll soon be starting on a DMT to slow things down. You know PALs are there to help you in the hospital, if you’re not happy. I wish you well and :crossed_fingers:you hear about starting your DMT soon.

X

I’m so sad to hear that delays did this to you. I hope you’re not in too much pain. Well done you for going to a 2nd neurologist. I genuinely don’t understand how it is acceptable that neurologists don’t follow identical procedure for everyone. Why is it such a lottery. I’m already walking with a stick, have been since my relapse in May. I was told that a DMT won’t recover what I’ve lost, so at first I wasn’t particularly bothered about waiting for the MRI. But I now see that was a mistake on my part. So I will heed your advice and start making some noise!

Cx

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Hi chezza,

Thank you for reading my response and I have done lots of physio as believe that’s helped me no end. At present I’m going to a group session with the neurology physio, it’s a 6 week program.
My neurologist now is a MS specialist and that makes the difference! I’ve found sometimes the only way is to complain and advocate for yourself, it’s helped me.
I’m on kesimpta and it’s definitely helping with some residual symptoms, but some I’ll be stuck with.
Stay positive and fight your corner to improve your quality of life.
I wish you well chezza x

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Hi Chezza, I see my MS nurse every 6 months on average and that’s some 18-19 years since diagnosis.

I now can’t remember how often it was during the initial period after diagnosis but it was a few times. To be honest, I know you will be wondering what your next one is for but it might be nothing more than to check how you are getting on, do a full review of symptoms, point you in the direction of further sources of help and assistance , and to tell you what happens from now on with treatment, annual MRIs etc etc. This is pretty much what happens in my regular 6 month appointments.

I think that if you have any questions about the range of available treatments , how often you will be reviewed, how often you will see her/him , about dos and don’ts , diet , exercise etc then this would be a good time and opportunity to ask

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Thanks Hank, really useful to know. I will take any appointment offered at this stage. I’m acutely aware that other people in different areas don’t get the same advantage.