To cut a long story short back in February I was given a ‘working diagnosis’ of MS- and told I would be treated as if I have it as most of the the signs (lumbar puncture, eye and nerve tests etc) show I do- it’s just not yet showing on MRI.
I was told I would get an appointment to see MS nurses about my fatigue and be seen by the consultant in six months when we’d look at DMD.
Fast forward to now and I have never heard from the MS Nurses and the only appointment I have been sent is for next January.
Is this normal? Is it usual to be offered basically no support after diagnosis?
Do people have MS nurses? I wouldn’t even know how to contact them to begin with if I am allowed to do so.
I just feel so lost being hit with the diagnosis and then cast out with no idea what to do now.
Fortunately/ unfortunately I work for myself and have a very suportive partner so have cut my work right down but I really don’t know what to do now.
For example, ever since I first developed symptoms I have been suffering terrible bouts of nausea and vomiting (not linked to dizziness or anything) which come on when I am over tired, spend too long in a car, or smell or taste certain things- pr just randomly when they want to. These bouts can last 2-5 days easily and leave me unable to leave the house or able to do anything. They can happen as often asonce a week or as rarely as once a month if I am lucky.
I am at a loss at to whether this is just another MS sympton and if so do I just ignore it, talk to someone about it or what?
If it’s not a standard MS sympton what do I do then?
When I was first diagnosed I didn’t see my neuro for about 3 months nor did an MS Nurse contact me, I guess it’s to give us time to come to terms with the diagnosis. Nowadays, I tend to see my neuro every 6 months and if I’m honest, he sounds like one of the few good ones. I attended an appointment and he invited an MS Nurse along, no prompt from me. She gave me her telephone number if I ever I need to contact her. You should have some contact info and yes you can contact them. I am a bit shocked that you have to wait and have waited so long for an appointment with the MS Nurse. There should be a number you can call to try and bring your appointment forward. Jeeez, you really need to try and see someone as you can’t go through those symptoms for the next 4 months. Have you got an appointment with a neuro sooner than Jan??? See if anyone else experiences your symptoms on here. If so, hound your neuro as you need to see them ASAP. If not MS, book in to see your GP.
Something that has really helped me is getting out to the MS events as they are a great source of knowledge and you can meet some MSers who are great for sharing stories and offering advice. Fellow MSers are the best for talking to about symptoms as they often have experience.
Hello and welcome It does sound like you’ve fallen through an NHS crack somewhere. Have you contacted your neuro’s secretary? He/she should be able to check your records and chase up any referrals/appointments. They will also be able to give you the contact details for the MS nurse. If you can’t get any joy from the secretary, your GP should be able to help. Good luck! Karen x
I was so worried about being seen as a whiner or complainer so I have avoided contacting them (even though they did ‘lose me’ before so you’d think I would be expecting it)
I know I just have to learn to live with the MS but was hoping that I would get some support from the Dr/ Hospital murses
I’ll try the secretary tomorrow and see if I can contact the nurses etc- hopefully that’ll help me not feel so lost with it all
Still really nauseus today so wll be ringing GP in the morning too in case it’s not MS
I managed to find the number to ring my hospital and after speaking to them it seems I did fall through a gap and should have been referred to the MS Nurses- which is now going to happen and hopefully I can now get some support and not feel so lost
I’ll post in the every day living forum about nausea and see if anyone has any advice
Glad to hear you’ve helped the NHS find you again It’s bad enough trying to come to terms with the new found diagnosis without the struggles of the NHS. My MS Nurse gave me some DVDs about DMDs which were really helpful… might be worth enquiring about.
Good luck with the MS Nurse, I hope all goes well and support is aplenty for you.
I’ve had a very similar experience. I had an MRI in April, was diagnosed in June and then told I would have another MRI in November to confirm diagnosis. Since then, I have been left completely to my own devices. I haven’t been referred to a MS nurse or anything. I was given the results of my MRI and that was that really. I did ask if I could have my MRI earlier but they told me that time was needed to see if there had been any changes and told me if my symptoms got worse to go to A&E. The only treatment I’ve had is couselling which my Doctor organised. I live in SE London. I wonder if we go to the same hospital? I have my next MRI at the end of October, so I am relieved about that.
That group sounds good Makky. I might come to that.
It does sound like you’ve fallen through an NHS crack somewhere. Have you contacted your neuro’s secretary? He/she should be able to check your records and chase up any referrals/appointments. They will also be able to give you the contact details for the MS nurse. If you can’t get any joy from the secretary, your GP should be able to help. Good luck! Karen x