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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

To think this is negligent

27 replies

Happyhippy45 · 11/09/2017 18:13

I was diagnosed with MS officially in early 2015.
I went to see my GP last Tuesday (4 business days) as due to continuing symptoms (difficulty walking, extreme fatigue among other things) I was pretty certain I was having a relapse of MS. (I had initially put the symptoms down in the beginning to another health issue and probably left it too long before I went to the dr.)
The GP agreed and said he would email my neurologist and he would most likely want to see me.
I didn't hear anything by Friday so sent an email to my neurologist myself. (His unit is closed over the weekend.)
I've still not heard anything.
I was reading that a relapse should I'll be treated as promptly as possible to prevent further damage. Is this correct?
I'm really starting to get worried now.

OP posts:
MSLehrerin · 11/09/2017 19:51

Go to A and E - they will contact someone on the neurology team or get you fixed up as an outpatient for IV steroids. My GP prescribes oral steroids for me now.

Original poster
Happyhippy45 · 11/09/2017 20:47

I was thinking about a and e but wasn't sure. MS hug is getting quite painful too. Could probably do with muscle relaxants too.
It is quite a long time to leave me to my own devices though isn't it? This is my first relapse and I'm new to all of this.......

OP posts:
picklemepopcorn · 11/09/2017 21:00

If you ask for MS to be in the title, you may get more people who are knowledgeable.

MSLehrerin · 11/09/2017 21:04

Have you phoned 111 for advice? They might be able to point you in the right direction at least. I see a neurologist once a year and MS nurse is the point of contact for relapse advice etc. Baclofen is a fab muscle relaxant. I was prescribed it by my neuro but get it on repeat prescription from GP. It's my wonder drug

BellaNoche · 11/09/2017 21:07

Ring the neurologists secretary in the morning and explain the situation.
Or if really unwell, as suggested A and E .

PlayOnWurtz · 11/09/2017 21:10

Get onto the neurologist secretary and PALS and complain/chase. Also ask your GP to write and chase.

I was referred to neurology as an urgent case this year and my appointment came through for 6 months time - frankly I would have killed myself by then - but badgering got me put on the cancellation list and seen within a week.

Hope you're ok

dnwig · 11/09/2017 21:12

The MS society website has a page on managing relapses.

dnwig · 11/09/2017 21:15

And it does seem to suggest that early steroid treatment for relapses helps symptoms but doesn't affect outcome in terms of damage.

Something to ask your GP or neurologist about?

Original poster
Happyhippy45 · 11/09/2017 21:25

Thanks all. I've already been through a long battle (5 months)with him a while to get a blood patch to seal a re leak of Spinal fluid caused by a lumbar puncture ironically to confirm diagnosis of MS he did. Also had another battle after blood patch to get him to listen to me about complications. He eventually did after quite a few emails and a lot of stress and frustration on my part.
I thought he would have been better with my run of the mill MS
I dont have much confidence in him.
If it's not any better tomorrow I'll phone 111. They usually send you to A and E regardless so I'm told.

OP posts:
PlayOnWurtz · 11/09/2017 21:28

Ring the neurology secretaries tomorrow too, I find medical secretaries to be the hidden gems of the NHS. You sadly need to fight a lot with neurology because they're so understaffed.

Are you in touch with an MS Nurse? If not might be worth asking

hazelnutlatte · 11/09/2017 21:29

Do you have an MS nurse? If you do, give them a call. In my area they would be able to get you booked in to an urgent clinic appointment.
You do need to be seen, but might not need steroids. The steroids can help you get better more quickly but won't alter anything in the long term, and the side effects are not nice.
However, access to disease modifying treatments for MS is dependent on the number and severity of relapses you have, therefore you need to be seen by a neurologist who can assess you and confirm that what you are having is in fact a relapse. You can have flare ups of MS that are not actually relapses, which will be due to things such as getting an infection. If this is the case then steroids won't be helpful.
If you don't have an MS nurse, look on the MS society website as they have contact details for MS nurses, hopefully you can work out which one covers your trust.

MSLehrerin · 11/09/2017 21:34

Just sitting here thinking...if there's an MS therapy centre in your area or nearby they might be able to give you advice or contact details for an MS nurse. As a PP said neurology is chronically understaffed so keep at them.

Here's my one and only neurology joke (probably the only neurology joke in the world come to think of it 😃)
What's the difference between God and a Neurologist? Answer: God doesn't think he's a Neurologist. 😉

PlayOnWurtz · 11/09/2017 21:36

Can you choose and book to another hospital? Is that an option?

Original poster
Happyhippy45 · 11/09/2017 21:40

I have an MS nurse. I didn't contact her because after my last appointment and my MS being stable for a good while, my neurologist said just to email him if I have any new or worstening symptom.
There is no neurology secretary there all the time. The nursing staff kind of take it in turns to man the phones/make appointments etc. Quite often the phone just rings out.
Place is a shambles IMO. Everyone running around with no time to do anything.
I was sure that the steroids just helped you recover quicker but didn't do anything to reduce the damage......then I read some random website that said you need them asap to prevent damage.......I should just stick to reputable websites shouldn't I?

OP posts:
Original poster
Happyhippy45 · 11/09/2017 21:44

MSLehrerin OMG! So the God thing is actually a thing! I thought it was just mine. No point in asking to see a different one then really is there?

Mine thinks he's a comedian too.

On viewing my MRI of my brain he said "There's not much going on in there," and then smirked.
Of course I believed he was just talking about there being barely any lesions

OP posts:
Original poster
Happyhippy45 · 11/09/2017 21:45

I could toddle off to another A and E in a different area...........

OP posts:
MSLehrerin · 11/09/2017 21:49

Neurologists are usually devoid of any bedside manner or humour usually. I've had a couple who I've suspected to have ASD too 😃 I've got one now who is fab - completely normal bloke who I could go for a pint with! I'm never letting him go!

PlayOnWurtz · 11/09/2017 21:55

They all have secretaries. You're thinking of ward clerks. Ring the switchboard and ask for your consultants secretary.

PlayOnWurtz · 11/09/2017 21:56

Ah see I think I got lucky my neurologist is lovely. "You want to try this treatment you've read about? Ok let's give it a shot!"

MSLehrerin · 11/09/2017 22:00

@PlayOnWurtz there are two lovely neuros in the world?! Fab 😃 don't let him out of your sight! Are there any female neuros? Don't think I've ever come across one now I come to think of it.

PlayOnWurtz · 11/09/2017 22:01

Mine is female Grin

MSLehrerin · 11/09/2017 22:05

Double result! Isn't it shocking though that I just presumed your neuro was a man?? 😕

PlayOnWurtz · 11/09/2017 22:06

Not really. Most medics, especially consultants, I encounter are men. Tbh they're usually compassionate the most shockingly awful consultant I've ever had was a female gynaecologist, she was dire.

MSLehrerin · 11/09/2017 22:12

How long have you had MS @PlayOnWurtz? Ten years (ish can never remember!) for me though I had my first symptoms when I was 14/15 (am now 40 something 😉 )

PlayOnWurtz · 11/09/2017 22:15

I'm under neurology for other reasons (lifelong) but have MS experience through a close relative so understand it from different angles to you guys. Sorry if I gave the impression I have MS