Last reply 2 months ago
Expecting too much?

Hello!
Hope anyone reading this is doing ok. I’m a little concerned about what I should be expecting from medical professionals regarding my ms. I had an MRI and neurologist said it was most likely MS and had a lumber puncture to confirm. Had a letter from him a few weeks later saying that yes it was MS and I was being transferred to an MS specialist neurologist and an MS nurse would be in touch. She called today and I explained that I know nothing except that I have it, no idea what type etc but I am finding things very difficult. Her suggestion was that she would send some leaflets out in the post. When I asked if there was someone I could see she (a little begrudgingly) said there’s a clinic I could attend at the end of April and I could talk to them then. I really don’t know if I was expecting too much or making more of it than I should? Is it just a case of diagnosis and then you’re left to get on with it?
Any knowledge would be much appreciated!! Thank you in advance!!

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dominics
2 months ago

@jo_buckland – pretty poor IMHO. You may want to consider changing hospital and neurologist – if that is a possibility. It depends on where you are located.

There are NICE guidelines for the management of newly diagnosed patients. This is a general link: https://www.nice.org.uk/guidance/conditions-and-diseases/neurological-conditions/multiple-sclerosis though you’ll need to drill down. The MS Society, the MS Trust, and others all have FOC helplines.

It is all new and somewhat overwhelming, you have to learn the system – though you shouldn’t, but that is another story – to get the best from it.

Best,

Dominic


grandma
2 months ago

Hi jo_buckland We don’t think you’re expecting too much at all. All Shifters have heard such horror stories. No one should be dxd (diagnosed) by letter, even if you have a ‘mild’ form of ms, all ms is progressive and should be treated as it is, a progressive, life changing disease that is not going to get any better by itself or go away ‘and die quietly in the corner’ though at times we feel that that is what some medical professionals would prefer. You hopefully have come to the right place, bit difficult to help as much as we’d like to at the moment as you don’t appear to have been put on any DMT ( disease modifying therapy) yet the correct thinking appears to be to hit the ms hard and fast in an attempt to slow down progression. You need to get in touch with your neurologist, via his secretary and make a nuisance of yourself, if necessary change neurologist , you are entitled to, Its your life, your future, do anything and everything that’s needed to have a good outcome. You only have one life and you should do everything possible to make it the best one possible. Good luck and keep posting.🙏🏻🤞🥊😍


highlander
2 months ago

@jo_buckland
You wouldn’t by chance live in Kent?
That’s how it went for me.
Ring up PALS at your hospital and make a complaint.
It’s remarkable how quickly they manage to get you into see them.
Good luck


cameron
2 months ago

The one thing you’re definitely going to need is a joined-up approach from a neuro team. That means that your MS nurse should be liaising with the neuro and providing information and ongoing support. If you’re not getting this, you certainly need to complain and if necessary, change hospitals. This is your right under NHS England guidelines.


stephz
2 months ago

Hi @jo_buckland You’re not expecting too much – I had to wait 6 or 7 weeks before I saw the MS neurologist after being diagnosed by a general one with Christmas in the way I didn’t have much choice. I’m very happy with my neurologist and even though I moved recently (normally meaning a change) I’m staying in his care because we get on so well.

See if you can speed your appointment up but I would wait until you meet the new neurologist and see how you get on.

I recommend reading this brain health report and bring it to your first appointment – it has new guidelines and will explain a lot of things: https://www.msbrainhealth.org/report


vixen
2 months ago

Hello @jo_buckland, well I’m glad you found Shift at least for support! I don’t know where you are, or if you’re in the U.K. if so, it’s alarming how treatment and support varies so much between areas. People being diagnosed by post is something that makes me really angry, and it seems to happen a lot. Can you contact your nearest MS Society? They could signpost you to local groups. The thing is, you do have to learn to become your own advocate. I’m fortunate in being able to access a great service where I live, but I am constantly having to join the dots and help tie things together. Stay strong, eat and rest well, and post any queries you have x


peterfrancis
2 months ago

‘jo_buckland

Hi

Like you, I often feel the sense of… “Is that it?” when it comes to dealing with medical professionals.

I was diagnosed as SPMS in late 2017, went through all the tests, lumbar puncture and scans etc, then diagnolsis.

Had several appointments with an MS Specialist Nurse who is nice enough and helpful in part but offers nothing of any real substance at all.

So yes, we are just left to get on with it and wither.


sfrox
2 months ago

Hi @jo_buckland first, I’m in the US not with NHS but these words of yours jumped out at me:

“Is it just a case of diagnosis and then you’re left to get on with it?”

The answer is yes. It is up to you to take advantage of the resources you are offered, and to ask the questions you need to ask. I’m enrolled with a neurologist in a large “public” MS clinic, and did realize there was no system that was going to nurse me along through the process. I had to remember what the last person told me and push things forward. Listen carefully to what everyone tells you, and take advantage of any resources they offer. This is what I’ve learned:

– Get a good support system outside of the medical thing. That will be your basis for happiness and feeling cared for.
– Note your concerns before medical appointments or conversations
– Listen carefully and repeat back important parts of what you were told
– Get on treatment if recommended (I didn’t and wish I had sooner)
– Keep all appointments
– Care for others when you have time <3

Wishing you the best

G


jo_buckland
2 months ago

Huge thanks to everyone who took the time to read my whinge and commented, it’s lovely to feel like you’re not on your own ❤️ Just to clarify though, I agreed to be informed of the outcome by post with the neurologist because we were both pretty sure of what the outcome would be and otherwise I would have had to wait a long time to get an appointment to find out. There’s some confusion about how long I’ve had it and I found I couldn’t write anymore with my right hand about 14 years ago and was diagnosed with displaysia but it wasn’t backed up with an MRI. Neurologist said my recent MRI shows that MS been around a long time. I can barely use either hand at all now, one won’t do as it’s told and the other one shakes so badly I can’t get a cup to my mouth so above anything I’m hoping they can help with that but she seemed more focused on talking about fatigue. This week has been appalling so hoping for a better week next week! Big thanks to you all again though, you give me hope!!

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