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Feel lost

Hello

I found out on Monday that I have ms and that I need to have treatment. The consultant was not that nice I felt she delivered the blow scribbled down the ms website to look at and told me hopefully I will be on the list for the new year and that was it. I have 3 children the youngest being nearly 11months and my partner. My partner has so many questions and I don’t have the answers. Right now I just feel like it’s so unfair and unsure of everything. I’m trying to carry on like normal but it’s hard with all the uncertainty. My partners mum is being strange with me but i guess she doesn’t know what to say. Was wondering if anyone knows how long the wait could be from being told to getting a call about treatment? What do i do or where do I go if I have an attack in the meantime?

Hello Stacey

That sounds like the crappiest way to learn you have MS ever.

I’m so sorry you’ve heard this from what sounds like the least ‘people friendly’ neurologist in the world. Not that it’s ever a nice thing to hear, but actually you want, or need, more than that.

You should be assigned an MS nurse, who may have a bit more time to help you get your head around it. If you’ve not been given the contact details of a nurse, try phoning the secretary of the neurologist and ask for them. Otherwise (and it might be a good thing to do this anyway) make an appointment with your GP to talk about your diagnosis and to ask her/him about an MS nurse. Any questions you have about symptoms and potential relapses could be talked over with him/her.

Meanwhile, have a look at https://www.mstrust.org.uk/understanding-ms/newly-diagnosed-multiple-sclerosis There should be some useful information to help you to understand the diagnosis.

You should also be given a choice of disease modifying drugs to help reduce the number and severity of relapses. This might be what the January appointment is for. Your MS nurse will be a useful resource to talk through your options, meanwhile, here a guide to the DMDs available for relapsing remitting MS: https://www.mstrust.org.uk/understanding-ms/ms-symptoms-and-treatments/ms-decisions Chances are you won’t get a completely free choice of all the drugs, it will depend on what prescribing criteria you fulfill plus what drugs are actually possible in your local area.

I suggest that you also check that the neurologist you saw is an MS specialist. Have a look at the consultants on your hospitals website, it will tell you the specialisms of the various consultants. If there’s another neurologist who is a specialist, try to see if you can switch to them. Have a talk with your GP about what the consultant was like and see what they suggest.

Feel free to come back here and ask us questions, someone is bound to have experienced whatever you are going through.

But don’t expect to get an MS diagnosis and to be able to just handle it. It’s a big thing for you, your partner and your family. This could be why your partners mother is being a bit odd. She’s maybe wondering how this will affect everybody. I know this isn’t helpful to you, but it’s also understandable.

Sue

where I live the ms nurse is the expert (no ms specialist neurologist) she is a nurse practitioner therefore the one who sorts the treatment. Pre my first appointment I emailed her re which treatments were available to me so that I could fast forward things & I did not want to read about treatments I would not be eligible for.

welcome to the club no one wants to be in.

i ordered every leflet available from this websight. I found it helpful for both understanding what was happening to me & as a way to explain issues I was having to others (family & work).

P.s I can’t explain why but I had the info for a week before I could read them. I think it was something around aceptence.

This forum I have felt is lifesaver, there are some very very giving, kind & knowledgeable people here who will be able to help. I am a newbe so I don’t have much experence to share, just the knowledge that others responses helped…a lot.

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One of the hardest things for you and your partner to come to grips with is the uncertainty - no one knows how things will pan out. However you can’t sit about doing nothing, you must plan ahead as you would normally do and the chances are things will work out but lurking in the back of your mind is the possibility that things will go pear-shaped. Don’t wait for things to come to you, you may have to become pro-active - make contact with your m.s. nurse, phone your neuro’s secretary enquiring when you will be able to start a DMD.