I don’t know where to start really. I was diagnosed two weeks ago with MS after an acute relapse and although we had been expecting the diagnosis, I am still all over the place emotionally. After having fatigue, balance and walking issues for almost 3 months, I was given steroids and felt a lot better these last 4 weeks (with the exception of the continuous fatigue that is). However, the last few days I have had a shot of pain in my left leg where I could not bear any weight and difficulty in walking once more. Not sure if this is a “new” symptom, but it is very frustrating and annoying.
I am a wife, mum of two little children and I am currently on sick leave from part-time employment. I thought I could handle all this, but I am becoming increasingly frustrated and down, even though I have a lot of help and support. I just don’t know how to start being positive.
I’m really trying to stay on top of things emotionally, I guess I would like to know how you start climbing back up?
Thanks for listening.
Hello s. Sorry to hear your recent diagnosis. I felt all over the place after I was diagnosed, it’s not surprising really is it when your told you have an incurable illness. But, I eventually saw the ms nurse, got in touch with the local ms society group and carried on. Coming on here is great as you can off load and ask questions. Have you been told about newly diagnosed days? Someone told me about them and I will be attending one in a couple of months. They are paid for by the ms society but the invite comes from the hospital - speak to your nurse if you have one or your neurologist’s secretary. I found you need time to regroup and for it to sink in. It’s good you feel you have a lot of support but sometimes you may need to talk more than people have capacity to listen. That’s what’s great about this forum - you are not alone on here. Best of luck.
Thank you Chatterbox and Sarah.
I do feel a little better today and I have told my neurologist about my leg. It was good to be able to talk out loud. I know my symptoms are mild compared to a lot of people, but it’s good to talk to people who are actually going through it. I know family and friends mean well when they say, “keep positive” and “rest when your body tell you to” but it’s very different when you go through it, sometimes you cannot he that positive, or you wish you could go through a whole day without the fatigue.
Thank you for listening and hugs x
You never need to worry that your condition is milder than some others. Everyone is welcome and having the diagnosis of MS is a tough thing to wrap your head around no matter how ‘mild’ your symptoms.
You should soon, if not already, be given the contact details of an MS nurse. A good MS nurse tends to be worth about 10 times the value of a decent neurologist. S/he will guide you through the business of sorting out a Disease Modifying Drug (DMD), and getting sorted with other professionals as needed. This might include physiotherapy, occupational therapy, bladder and bowel specialist nurses and any other services you might be in need of in the future.
Hopefully, you’ll start on a DMD, have no or very few, further relapses and have no need of further help from any of these services.
With regard to DMDs, have a look at MS Decisions aid | MS Trust This will give you a leg up when the time comes to decide on a DMD. Most people would recommend you take a DMD, their aim is to reduce relapses and the severity of relapses. You probably won’t get free choice of all the options, it will depend on what’s available in your area, the severity of your MS, and your own choice.
And in terms of getting sorted with the diagnosis emotionally, it may take some time. People tend to go through all sorts of emotions, from feeling very tearful (a kind of ‘why me’ situation, that I still have from time to time after 21 years), to furious anger, to maybe a kind of acceptance. But don’t expect that to happen overnight. To be honest, I don’t think I’ll ever get to that state of complete acceptance. I’m still angry. But in a generally quiet sort of way.
As others have said, you can use this forum, together with the Everyday Living forum to help you understand the bloody disease and its symptoms. Ask whatever questions you have and someone is bound to have an idea of the answer. Or just an opinion. Also of course, you have all the resources of the MS Society and the MS Trust which might be useful to you as you get to learn your way through the morass of information about MS.
Thank you Sue for really helpful advice.
I have not been given a MS nurse as yet, as they are seeing how the MS has progressed over the last 6 months. My case hasn’t been straight forward as I had an acute relapse 8 years ago (CIS) and another acute relapse last year. Looking back I have had some blips or relapses along the way, but they were never recognised as neurological or blamed on other factors. It was only when I had a recent MRI and VER that MS was discovered after many, many tests. I’m sure lots of people can relate to this
I know it is still early days and some days are better than others. Thank you all for listening.