Hi everyone,
I’ve recently had a list of symptoms relating to MS, my mum was diagnosed when I was born and the doctors, nurses and even midwives were all worried that I would also get MS after having my little girl. Nothing showed for a long time, I suppose they were expecting me to collapse in a heap on the floor seconds later? My little girl was 5 months old when I first started getting tinglings, slowly, more strange things were happening and I realised that I had actually had all of these symptoms 2 years earlier and that they have been on and off for a while. I hadn’t been to the doctor as I was out in Spain visiting my parents for a couple of months. I too it really seriously one morning when I woke up and couldn’t walk. My legs felt heavy and tight and moving them was agony, I fell over in several attempts and my husband had to help me up.
The day we got home I managed to get in to see my GP and she has referred me to a neurologist. I am desperate to get in there ASAP as my husband is in the Navy and due to go away soon for 2 months.
I really wanted to know how long it took for everyone else to get referred and what your experiences are? I am very scared, mostly because of the baby and the fact that my husband is never here. My mum told me when she was first diagnosed, 22 years ago, she was kept in hospital for 10 days to be constantly monitored and tested.
Any experiences are welcomed, I just need an idea of what is potenially on it’s way.
Thanks xx
Spending time as an in-patient when they’re trying to pin down what is the matter is not typical these days, I don’t think. Outpatient clinic appointments, appointments for MRI scans and maybe lumbar puncture and one or two other diagnostic things - none of them requiring in-patient admission - are more usual for people who they think might possibly have MS. And lots of waiting for clinic appointments to come round, and waiting for test results, of course! But most clinicians are family people themselves and they tend to do their best to work around the fact that their patients have lives to live and responsibilities to discharge. They won’t be trying to drag you in for a hospital stay unless there is a very good reason for it.
I am sorry that you are having such a worrying time. I hope that you get to the bottom of your health concerns soon, and that your worries turn out to be unfounded. The great majority of children of people with MS don’t get it themselves, but you know all that.
Good luck.
Alison
I had a reply from one of the specialist nurses on www.brainandspine.org ,the website of the Brain and Spine Foundation. She said that the average waiting time for a neurology referral is 8 weeks. I read on the NHS website that the goal is 6 weeks and on my latest neurology referral, it says that they are legally obliged to see you within 18 weeks. Having said that, you can phone the secretary and ask if they have had any cancellations. My symptoms also started happening after childbirth, double vision for one, then I was OK for three years and I’ve been having various problems for two years. I have a diagnosis of FND but strongly suspect MS and they haven’t yet definitively ruled it out yet. Best of luck 