Newly diagnosed


I’ve recently been diagnosed (Jan 2014) with SPMS. It affects my balance and walking on my right side and I also suffer from weakness on my right arm.

Since my diagnosis I’ve not heard from a nurse to discuss possible treatments and I’ve got to be honest I’m a 34 year old mum of three so I’m quite stressed about it. Being mobile is really important to me, to make sure I am doing the best I can for my children and to ensure I am able to do my job a an LSA in my local primary school.

What is the first thing I need to be doing? I’d like advice from people who are going through it as well, so I hope this is the place to look.


Hi Daisy-doo

Firstly, I’m sorry to hear of your recent diagnosis. It’s natural to be stressed about it, and it doesn’t help when it feels as if you have been forgotten.

Did your neuro give you contact details for a nurse in your area? Mine didn’t until I asked about some support and then he remembered he was supposed to give me her leaflet, duh! I would contact the nurse if you have the details or the neuro’s department if you don’t so you can obtain a number for her. The nurse is your access route to all the other services which will be able to help, eg Occupational Therapist, physiotherapy etc. I would imagine that with balance and weakness you would really benefit from some physio. The OT and physio can look at ways to make things easier in your home as well. Your nurse may be able to prescribe some meds that can help with any ongoing symptoms you are having.

That’s all I can think of for now but I am sure others will have some more ideas. As you said, the lovely folks on here will understand what you are going through and we do try to support each other.

Take care

Tracey xx

Hi daisy-doo Sorry about your recent diagnosis I’m a single mum of 2? Ot can help I’ve got a perch chair for cooking and it makes all the difference for cooking means my legs don’t hate me afterwards. (Though I didn’t have patience to wait for ot I bought one from amazon it’s excellent. Do you have friends /family that can help to give you a bit of a break. Tracey has also given excellent advice? I’m not sure about gps but mine has been excellent that she has really great support and been seeing her every few weeks monitoring. I may be lucky though as she a family member with ms. I know this is emotional blackmail but I took my baby with me and I’ve been seen treated/helped quickly. Em x

Hi As with most services there are usually waiting lists to see other health professionals for support like an ms nurse (not all areas have this service) or physio etc so don’t leave it to long before chasing it to make sure you can access support as soon as possible. I had to wait to see ms nurse who refered me to physio and OT where I joined another waiting list. Waiting times vary from area to area and is also dependent on how urgent your case is considered. Good luck Mish x