Forum

New diagnosis

Hi,

I was diagnosed with MS last Tuesday by a Neurologist. He believes that I have been relapsing since early July. I have completed the course of steroids but my symptoms don’t seem to be easing. Just wondering how long they tend to last for other people? I’ve now been off work for two weeks.

thanks

Sorry to read of your DX but welcome!

Have you told DVLA and car insurers if you drive?

Relapses can last 24 hours to months. You’re MS nurse should be able to advise.

Best wishes.

Not informed them yet but it is on my to do list.

How long does it normally take to hear from the MS team? I’ve not heard anything yet.

Hi Donna, I was diagnosed by the neurologist last week too, I also had a course of steroids seemed to have a massive crash after so I’m now on a taper dose and my symptoms aren’t easing either. I am also waiting for an appointment with the MS team and was told that it could take around a month x

Hi,

I think it was about a month bfore my appointment with the MS nurse after the neuro referred me (getting on for three years ago) I was over my relapse which was quite mild anyway. If I phone them (uuallly an answer machine) they call back within two days.

It would be nice to speak to somebody soon because I’ve finished the course of steroids with no improvement in two weeks. I’m now going crazy in the house and the not knowing doesn’t help. I guess I will just need to be patient.

Donna and Gemma

Welcome to specialist .

I can’t give you any definite answers - as you are going to find out very soon, the only answer you will get consistently is “everyone is different”

I was in your position at the beginning of June. The steroids take about 4 weeks to kick in so don’t expect immediate results. You will likely be climbing the walls with frustration, loneliness and feeling abandoned. I would suggest that you take this time to rest and let your body do what it needs to.

It takes blooming ages for the ms nurse and follow up appointments to kick in. You can fret about it but the nhs wheels turn slowly and afraid you just have to wait.

3 months later I have seen the ms nurse, had follow up with the non specialist neuro and been referred to the ms specialist neurologist. I have speeded things up by seeing him privately.

Guess my advice would be patience, rest, rely on your family and friends. Take any help they offer, dont let your pride get in the way. When the time is right, make sure you get referred to an ms specialist neurologist.

Be kind to yourselves and use the forum as a sounding board when you need to - everyone is friendly and welcoming.

MS Society and MS Trust are the best sources of reliable information.

Good luck, take it easy.

Janet xxx

That should have said welcome to the club :wink:

Thank you Janet, once you get an MS nurse do they help sort things out as in support at home etc? I’m a single mum with a 4 and 3 year old I’m currently relapsing and I’m struggling big time to care for them and myself I have phoned social services this morning to ask if there’s any support I’m entitled to but they said they will look into it and get back to me xx

Hi Gemma

The MS nurse can put you in touch with an Occupational Therapist (OT) who i believe can say what support you need. In the meantime have you tried speaking to your GP. I would think they could help…

Does anyone else know how Gemma can access some support ?

Janet xx

Thanks Janet, it’s comforting to hear other people’s experiences. I have been trying my best to do things for myself as usual but I’ve started to relax more now, especially as still unable to walk properly. I just to need to wait for this relapse to pass.

Gemma, I can’t imagine having to care for two small children at this time, I hope you find some extra support soon.

Hey Donna, I have had steroids twice now, the first time before I was diagnosed and I did not see any immediate change but my symptoms did gradually ease over a few weeks. I then quite quickly had a relapse about a month later. ( I have had RRMS diagnosis now.) I finished second lot of steroids about 2 weeks ago and haven’t really seen a change in symptoms. I am also taking amitriptyline which has helped with pain etc! In the same boat as you at the moment waiting for it to pass, been just over a month now. I have been wondering the same as you have and what other people’s experiences are like etc.

My symptoms are starting to pass now, hoping to return to work next week on a phased return, all going well. It’s good to hear other people’s experiences because there is a fear of the unknown with this illness and obviously everyone is different.

i still haven’t heard anything from the MS team but I do have an appointment with the neurologist coming up soon. It does feel like you’re on your own after having the diagnosis.

That’s exactly how I feel, really just not knowing what to expect. I’ve been really lucky, I saw the MS nurse the day after I was diagnosed and have an app again this month. Really just discussed DMD’s in the first app. I’ve still got symptoms but I’m also hoping to go back next week. If you ever want to chat send me a message!

Hello I was diagnosed this week .my doctor said that a ms nurse will be in contact .what happens now ?