Last reply 4 years ago
New to all this

Optic neuritis over Christmas last year (that and Gatwick flooding meant Christmas really sucked!), MRI end Jan, waited patiently for results, rang hospital in June and got an appointment in late June. Results sucked. Doc said he’d refer me to the MS clinic. Now it’s October and I’ve had no word except for a copy of a letter to my GP about my results and saying I’ve been referred. Is that normal? I’m moving house next week, I’ve redirected my post but I’m still worried I might miss something.

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4 years ago

Hi @fingersandtoes ,

Sometimes, the wheels of the NHS can move very slowly and things can get overlooked. However, in a case like yours, i.e. a new diagnosis, you would think that they would go out of their way to help you quickly and efficiently.

You should contact your GP, as your Primary Care Provider, in the first instance, as they would also want you being “managed” effectively too.

Anyone with MS in the UK is usually assigned an MS Nurse. This is a specialist nursing role, which exclusively deals with MS Patients. You can look up your local MS Nurse here :- and potentially self-refer.

In this world, we are Master of our own destiny, so we have to make things happen.

You’ve probably got a shedload of questions too. So let us try and assist, whilst you wait for the NHS to groan into action.

4 years ago

Thanks @stumbler. Thing is, my GP is a series of locums and trainees, I’ve never seen the same person twice. Now that I’m moving I’ll have to register somewhere new.

I am seeing an ENT surgeon next week about some symptoms I was getting at the same time as the eye stuff (oh yeah, I got double vision in June last year), basically dull headaches that painkillers wouldn’t touch (even though they weren’t horribly painful – just annoying) and a lot of pressure in my sinuses and behind my eyes, but no blocked nose, it felt like the blockage was further back. I had a definite sinus infection with the double vision last year though, runny nose etc a couple of days after the double vision started – which really relieved the pressure and my vision cleared.

Now I’ve had the MRI result and the doctor was fairly certain it’s MS. The consultant I originally saw was upbeat and reassuring, but this doctor kept taking about serious, high risk etc. Threw me into a real spin and a week later the tingling started.


4 years ago

@fingersandtoes , don’t worry about the locums and trainees. You’re a patient at that practice, so any one of them should be able to help you.

You could also call up the Consultant’s Secretary/PA, to chase up the MS Clinic referral.

The ENT referral should help you answer a few outstanding questions.

So, your diagnosis, is it a definite diagnosis yet, or is it still to be formally acknowledged? It’s unfair to leave you in any doubt. And, it’s not right that you get two differing messages from medical professionals!

So, some home truths about MS. Yes, it’s an incurable, degenerative neurological condition. But, it’s not going to kill you and it is now a manageable condition. You need to introduce balance into your life, if it’s not already there. So, a balanced diet and a balanced lifestyle, avoiding extremes.

“Listen to your body” as it will tell you when you’re doing something it doesn’t like. If it tells you to have a rest, see if you can snatch a bit of a break.

And, most importantly, see if you can avoid worry and stress. I know, a recent diagnosis of MS and moving don’t help. But, the negative emotions release chemicals in the brain that can adversely affect your Central Nervous System (CNS), which is what the MS goes after too!

Also, if you’re a driver, you need to tell the DVLA, and your car insurance company, about the diagnosis. This a legal requirement and very procedural. It doesn’t stop you driving, unless you are advised not to, or you feel unsafe.

4 years ago

Thanks so much for taking the time to reply. No, I’m not formally diagnosed yet.

Listening to my body is something I do quite well most of the time, as I have hypermobility which can cause fatigue and pain if I’m not careful. Three years ago I was having trouble walking a mile to work. This year I ran my first half marathon, so I think I could say I’ve brought it under control! However, I have just started a new job which is a lot more physical than my last one and tires me out easily – which means I’m not getting out for a run as often as I’d like.

I stick to an anti-inflammatory diet as much as I can. Leafy greens, oily fish etc.

Stress is the bugbear though. The double vision happened when I was getting ready for an important job interview, and at Christmas my Dad was ill and I had a lot of other stress going on.

That’s why I appreciated the consultant’s attitude – I could tell he was taking me and my situation seriously while remaining positive. The other doctor just scared me.

4 years ago

[email protected] I referred to neuro in April this year on NHS appointment was July so could not wait that long got in touch with a private neuro did not have medical insurance he assessed me said I didn’t have MS thought it was more to do with my back musclosskelton but didn’t have my scan pictures he managed to get hold of them and took me into Salford Royal where neurology is based got all scans done and lumber puncture confirmed by them had IV steriods pumped into me for 3 days I was in hospital for 2 weeks glad I went private told to keep my NHS appt which I did so a locum neuro told me I had MS as lesions on my brain and 1 on my spine told me to have bloods done and to see him in 6mts time from July that appt ended up being April 2015 didn’t tell me about MS nurse till I went back to GP told her about the appt she were’nt happy so got in touch with Salford I googled MS nurse Rochdale got her number rang and left her msg then got a letter she rang me when she got my msg due to have another MRI next week just been on Gabapentin for neuro pain and burning not working so being changed and I have lower back pain as @stumbler said rest stress is a nightmare as recently I’ve had lot of stress as my mum fractured her arm at the week end and my sister has been on my back to help her out even though she knows I’m not driving at the moment I’v been in touch with my neuro through his secretary got her number through googled him for the Rochdale area


4 years ago

It sounds like you’ve had a frustrating time with this but at least things are moving for you, and I’m glad the consultant has been helpful. And yeah, I’ve been sent copies of all the correspondence between my consultant and the GP surgery. I rarely see the same doctor twice at my GP so it’s good to know they are talking but it does take it’s time to filter through.

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