@Human 

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Human

Disappointing Treatment Plan!

Greetings everyone! First post, newly diagnosed and pretty disappointed with the level of 'care' received throughout diagnosis and most importantly after diagnosis. To cut it short, after months of tests, dismissive doctors and a whole bunch of frustration; the consultant confirmed it was ms based on a single brain lesion, abnormal VEPs on both optic nerves and inflammation evidence in LP. So what's the treatment plan? A scrap piece of paper with numbers of ms nurse, IV steroids lady and names of two possible DMDs. Got the steroids and I wish I hadn't! Ms nurse calls several weeks later to say 'I need to book you in for steroids' (after the fact that I'd already had it) Then suggests booking me in to see her. I'm still awaiting word from her after several weeks. I called and left a message and nothing yet. I understand the level of workload and stress on NHS staff but the 'care' I've received throughout this ordeal is nothing short of crap. At this point I feel that I shouldn't expect much from the NHS if anything at all. Do you feel you're on your own with MS? I certainly do.
@Stumbler

Hi @Human and welcome. It can feel frustrating, especially when there appears to be an absence of joined-up thinking. But, it is not unusual to leave a definitive gap after diagnosis, to give the patient time to get their head round the situation. You're right, the NHS are stretched, which means that we have to make sure that we remain visible at all times. We don't want to be over-looked. As for steroids, these are prescribed when a relapse is causing serious issues, e.g. visual or mobility, to bring the relapse to a quicker conclusion. Yes, there can be some immediate side-effects, but there side-effects with most medications. Keep chasing up the MS Nurse and do your own research into the Disease Modifying Treatments (DMTs) that are available. You'll usually be offered the standard first line treatments, whereas there are many others available now.

@cameron

I agree with you, you've definitely been short-changed. (I'm presuming you are in the UK?) Two suggestions: the inadequacies of the neuro team may have less impact if your GP care is good. You need someone who is a) on your case and willing to liaise with the neuro and specialist nurses and b) doesn't dismiss each and every health concern you have as necessarily being the MS. I would strongly advise you to change doctor and/or surgery if your current one is less than excellent. You could also be seen at a different hospital: this is what I did after a disastrous first encounter with my local neuro, whose parting remark was that I should go home and wait for things to happen to me. I now go to London, where there are several centres of excellence. (My neuro is an MS specialist and involved in clinical trials). It's a three hour journey but so worth it that quite honestly I wouldn't care if it took even longer. You won't get any help with fares and - depending on how sympathetic your GP is - you may need to argue your case to get him/her to refer you, but the NHS allows you to be treated at any English hospital. Just my thoughts, but ... you're right to be angry. xx