@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

@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

@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

Margarita

@Margarita

There really really needs to be some standard welcome to MS seminar for new patients or something. (I've been giving something similar to med students at my bedside all week here!) At least you made it here, where there's plenty of help to be had. Can only echo what others have said, do your homework and you'll be your own expert and advocate. If anything is ever going to be worth the man hours this has to be it. Makes me sad for those who don't end up here or get given any clue where to start and even more so for those just not up to managing an unexpected second career in medicine!

reddivine

@reddivine

You were offered 2 DMD? Wow, 2 more than me. So first off, aftercare is very variable, depending on health authority. Use the MS nurse, chase up with phone calls and emails. They ARE busy but persevere

tessa

@tessa

Hi @human I totally empathise with everything you say. I have recently had a similar experience and felt totally alone and unsupported by anyone. Left really to look it up on the internet! Until I joined this site which has been amazingly helpful. It is not good when GPs are so "overworked" . I don't want my GP to hold my hand but a bit of empathy and proactive interest would be useful. I have had to do all the work and felt I was being a bit of a nuisance. I apparently have spms after having had a very severe attack over 45 years ago from which I made a complete recovery ( given ACTH ) and absolutely nothing at all until now so it has been a shock and like a new diagnosis and I have obviously no support systems in place over the years . I agree with what Cameron says about changing GP if you don't feel they are helpful ,and also about asking to go to another hospital. I am starting to make these changes. Although I now have a condition which there are no current medications I still want to be treated as a human !

potter

@potter

When I was diagnosed with MS the neuro's first question to me was what medicine did I want to take. I thought he would prescribe or suggest one but he said that would be my decision. So I went home and did my research, now I research any questions I might have before I see him. When I started having trouble with my shots after 5 years I did my research and decided on Tecfidera, he wrote the prescription for me. After I was diagnosed I thought now I won't get the run around from doctors who think I am a whiner or crazy. WRONG The GP will say that sounds like MS you need to see your neuro. So I see the neuro and he says that doesn't sound like MS you need to see your GP. I learned right away I was on my own, I keep up with clinical trials, research diet and nutrition and new DMT's. You may have to find your own way like many of us have. Potter

Human

@Human

Thank you all for the great responses. It seems to me that the level of 'care' can be less than ideal across the board. I have been contemplating switching hospitals however, I wonder if the grass is really greener on the other side. Perhaps i'll wait a little and see how it goes before deciding on whether to change hospitals or not. I cannot agree more with the comments about knowing more as well as researching and being one's own advocate. By the way, this forum is a great source of info which i've been visiting for several months so thank you all for sharing your experiences and knowledge.

PV04

@PV04

Similar. It really depends on what part of nhs. Initially very slow - 6 months for appointment just to see neuro who I was less than impressed with from first experience. Got lucky as work medical insurance let me see a neuro privately. I picked a ms specialist. He agreed to take me on as nhs. Got a very good ms nurse. Treatment was quicker and he was willing to prescribe strongest drug currently available. If you can go private to try and speed thing up.

potter

@potter

Pv04 you are lucky to have a MS neuro the closest one to me is 200 miles away and a years wait to get in and see her. I remember asking my neuro about a new study I had read about. He said that he hadn't heard of it but I need to remember he is not a MS neuro so he can't keep up with all of the studies, he has too many diseases that he treats. Potter

cameron

@cameron

I'm inclined to disagree with your opinion on your neuro, @Potter! He may not be an MS specialist but he is paid a shedload of money to keep on top of his subject. If he's not up to speed you'd have to wonder what journals he reads and what he does generally to keep himself up-to-date. I say this because my neuro is an MS specialist but I honestly can't envisage anyone presenting with another neurological condition getting less than the excellent attention he gives me. He'd be as attentive, listening and thoughtful to someone with Parkinson's or epilepsy- of that I'm sure! I really hope that yours is otherwise excellent and that this was an atypical lack of knowledge! You deserve the best. xx

gulfv

@gulfv

Hello, I am just going through a very similar process. When I first presented to a GP with my latest symptoms, I expressed some concern and worry about what I was feeling; her reply 'well your last relapse was 30 years ago' 'don't be so ridiculous' I describe it to my family and friends as my limbo disease! Everyone just leaves me hanging. I have had a verbal diagnosis from my neuro (who only works one day a week) but there is nothing in writing. He prescribed no treatment, didn't tell me what my MS is, just advised me to come back in four months to see him. However, I have been doing as much research as possible and thanks to the amazing https://www.mstrust.org.uk/ I took charge of my treatment. I visited my GP today with a list of questions, all written down, and it was so different. I got copies of all my notes and letters, I got an appointment with a speech therapist and got an appointment with a MS nurse. They even admitted I probably know as more about MS than they do. I know this is just my story, but it may give you idea's. Take charge, do loads of research and tell the GP what you think you need. HTH