After reading this News & stories | MS Trust I’m once again wondering if I should have got more care when diagnosed.
Basically I spent a year having a consultant telling me it probably wasn’t MS (this is at the special one-stop diagnosis clinic at the national neurological hospital at Queens square) and not to read anything etc. Then at my next appointment I was told it was MS and they would see me in six months. That was it. They didn’t even have a leaflet to give me about MS explaining what it was.
I wasn’t seen until a year later and the appointment was just as bad with everything from my severe eye pain to problems walking were dismissed and I was told it either was nothing to do with MS, or it was and either way to just get on with it.
2 years+ down the line I’ve never had anyone explain what MS is and still feel lost. I read people mention MS nurses, medication etc and have none of that.
So, what was your experience and should mine have been better? Am I missing anything never having seen an MS nurse?
I was dx nearly 25 years ago so you would think that things had changed a bit. It seems not. I was told to go away and live a healthy life. It was over 10 years until I saw a neurologist again!
My experience is that you have to take charge yourself. If you sit and wait for things to happen they probably won’t. I don’t use my MS nurse much – but I know she’s there. Ask for a referral. (Most MS nurses are very stretched so you might have a long wait) They are a good conduit to the consultant. You can ask them about things that you wouldn’t ring a consultant about but they will intervene and get you an appointment if they think it is necessary.
As for not reading anything – I think the time for not doing that is passed. You can only take charge of yourself if you have a handle on what’s going on. The booklets on this site are an excellent starting point. You can read about drugs and who is eligible etc as well as more about what MS actually is.
If you feel that the neurologist has been less than helpful it’s probably time to make the GP your best friend. Although GPs are incredibly busy they can be a good first line of defense.
And there is always us of course – some very knowledgeable people frequent these boards.
Sorry I should have said that reading and comprehension is very hard for me. Someone else is helping me with the forum. They have read leaflets to me but we’re not really any wiser as I struggle to understand or have questions and he can’t help try as he might.
My neuro never mentioned a ms nurse when I was DX , so I used the search facility’s on this site, found there contact details and called them myself had a appointment with her a week later. Take care Gray x
I’m sorry that you are still not getting very good service. My experience during diagnosis wasn’t very good but I am well looked after now.
I was told bluntly by a ward doctor that I had MS which was overturned the next morning by a neurologist who said I had had one episode and it would only be MS if I had more symptoms at a later date. The previous afternoon, when the ward doctor had told me it was MS, it hadn’t been explained at all and I only knew that MS puts people in wheelchairs so I promptly burst into tears at which the doctor looked surprised!! I’m not sure how he thinks I should have reacted … perhaps I should have been pleased and shaken his hand?!
When I was formally diagnosed 4 months later (after a massive relapse) I had of course read up on the condition by then so at least I knew what it was. I still had to ask if there was someone I and my son could talk to as we were having trouble coming to terms with it and then the neurologist remembered he should have referred me to an MS nurse so gave me her details! Luckily as I had had two significant relapses within a short time, I was immediately eligible for DMDs so I was transferred to a prescribing hospital where my care has been better by a country mile.
Have you tried to find out if there are any local MS branches near to you? It was one of the first things I did when I was newly diagnosed as I needed to speak to others who had been through the same thing and knew what it felt like. Once I had spoken to other MSers I didn’t feel so isolated. They also have trained counsellors and benefit advisors etc who can put things into laymen’s terms and would help you with the leaflets etc. They also have separate carer’s meetings and so on. We have monthly socials and days out in the summer and there are people from all walks of life so it’s easy to find someone to chat with who has similar interests apart from the MS of course. (You can search for local branches using the Near Me tab from the homepage on this website.)
Hi there, What a rubbish treatment you have had. To my knowledge the hospital you were diagnosed at is highly esteemed in neuro research. However, my experience of those neuros with interest only in research are very poor at providing adequate care. I would suggest you make an appointment with your gp, explain the situation and ask to be transferred to the care of another neuro, maybe then you will have the correct care, drugs and ms nurse you should have been having already. Hope you get somewhere soon J x
I looked up the Royal Neurological Hospital on the NHS Choices website and they appear to have a number of dedicated MS specialist services including MS nurses.
There is a phone number for patients 020 3448 1102 or 07961 222 232 which might be useful for you.
My brother is under the neurosurgeons at the Royal for a physical central nervous system problem. He is not the greatest fan of the Royal - not for the quality of their medical care and expertise but because their paperwork is a bit of a shambles to say the least. He has even been removed from a waiting list for urgent neurosurgery because the surgeon’s secretary “pressed the wrong button” on her computer
I think that you may have to be a bit proactive in getting the treatment and information you need and deserve.