Newbie with ON/poss other symptoms

Hi everyone

I’m not really sure what I’m hoping to achieve by posting here, but feel like I need to talk about this and don’t really have anyone to talk to. Well, I do, but I don’t think my husband is taking things seriously and I don’t want to panic anyone else.

I had a bad headache, starting on a Tuesday. It went on and on. When I woke up on the Saturday, the vision in my left eye wasn’t right. It started with what appeared like sunspots and has very gradually got worse over the last week though is still fairly mild comparatively. The headache has gone but I still have eye pain which is controlled well with paracetamol. My GP referred me urgently to an ophthalmologist who said he thought it was ON and said I should go back to the GP and start to try and find out the cause. The GP explained the links between ON and MS (Dr Google had already told me!) but said I shouldn’t worry as I’d only had one symptom. I reminded him that I had sudden muscle palsy in my other eye a few months back (lasted a few weeks), and numbness/tingling/strange sensations around my torso and left thigh about eighteen months ago. He scrolled through my notes where all this was recorded and said something like ‘ah yes, you need to see a neuro’.

He has referred me for a neurology appointment but has warned it is likely to take a long time to come through. Roughly how long would you expect to wait for an initial appointment? Is there anything else that should be happening, or that I should be doing in the meantime? I know it sounds ridiculous but I’m having such anxiety at the prospect of an MRI … I needed one a few years back for something unrelated and I just couldn’t stay in the machine, I was utterly terrified and the panic I felt was unreal, to the point I felt like lashing out. I was the same, even with diazepam, on the next appointment. Any tips? What are the chances of an open MRI on the NHS?

Well that turned into a bit of a ramble haha! I’d be really grateful to hear any thoughts on any of the above as I’m feeling pretty alone with it all.

Thank you :slight_smile: x

Hi

Well as far as how long to wait for a neurologist appointment, that depends on where you are in the country. If your GP has only just referred you, you are going to have a minimum of weeks to wait. But in some areas this might be all whilst in others it could be months.

When you know which it’s likely to be, you could (if you can afford it) speed things up by getting a referral to see a neurologist privately. The way to do this is to do a bit of searching on the internet and find a private neuro who also has an NHS practice. Often people see a neuro privately for the first appointment, the get transferred back to the NHS for tests and further appointments.

If you are being investigated for MS, there will be an MRI. I believe you can get an open MRI on the NHS but you may have to travel further and / or wait longer for the test. You’ll have to discuss it with the neuro when you get to see one.

There really isn’t much you can do in the short term. Apart from stop asking Dr Google for help. He’s a rubbish doctor and it won’t help you to scare yourself silly. I would suggest you talk it through with your husband. Yes, he’ll quite likely tell you it to worry. But as you say, you don’t want to worry anyone else. You do sometimes need to share these fears though, so if your OH isn’t helpful and you can’t talk to anyone else, feel free to come back on here. There’s quite often someone who can understand what you’re going though and will take you seriously.

Sue

Hi Sue, Im being seen at Royal Derby and was informed it was a 15-18 week wait for routine Neuro referral. Im being seen quicker as they’ve messed up long story. Been in their care under ENT from 23rd Dec was an in patient but only had CT scan. Then MRI end Feb results took till 27 March seeing Neuro on Sat as urgent appoint… May not be long but omg the anxiety!! Hope this helps and hope your area is quicker and good luck .

Sorry meant post to you Nic am rubbish navigating site ooopps

Hi Ssssue

Thanks for your message.

I’ve been looking into things this morning and apparently it’s a sixteen week wait in my area for an initial neurology appointment. I can see the same chap next week for £250 (and can claim £200 of that back through a health cash plan policy I pay into). My worry is that I’ll do that and then not be able to afford what comes afterwards so will end up at the back of the NHS queue anyway. I’m not really sure how these things work. I do know that I can get an MRI free of charge and pretty quickly through the same policy, once I’ve been referred for one. I’m told it’s not an open MRI but a bigger machine so isn’t so close to the face which is what panics me.

I’ve got lots of blood tests on Friday so I’ll wait and see if they throw anything up before committing to anything but I think I am tempted to see the neurologist privately.

I’ve talked to my husband a bit more but he’s one of these who faces stuff when he has to, and he’s lost both of his parents in the past year so think it’s a bit much at the moment.

Thanks again x

I was really anxious about the MRI as well and my only advice would be to close your eyes and imagine yourself somewhere else. You really have to practice your breath control (yoga type breathing) and concentrate on that throughout the process. In my mind I am on a lounger in the garden in the sunshine !!! (must admit that the noisy neighbours sometimes cause a little anoyance with the beeps and buzzers going off).

I think we both have a long wait for a neuro appointment I was told today mine will be about 10 weeks away and that is after having an MRI so I too am trying not to panic. My biggest problem at the moment is anxiety!

Good luck and stay strong and calm if you (we) can.

x

Hi Sue

Sorry for the delay in replying - I’ve been trying for days on my iPad but kept getting error messages so I’m on the PC now. I found out that there was a sixteen week wait in my area so I’ve booked to see the same guy privately in a little over two weeks. I feel better knowing that appointment is in place. With regard to the MRI, I’ve got a little policy that I pay into that will provide a scan on referral from a consultant. I’ve spoken to them and they told me that they do have access to a wide bore MRI. Not quite an open but I think it will help. I’ve just got to suck it up haven’t I!

My husband is finally on board - I think it was my GP suggesting I go private if finances allow that made him realise I wasn’t being silly.

You’re right about Dr Google! I can’t say I’m not reading things, but definitely being selective with the sources.

Thank you x

Hi Jane

Thanks for your message and sorry for not replying sooner - I kept getting error messages!

It’s a sixteen week wait for an NHS neuro in my area too so I’ve booked to see the same guy privately in a couple of weeks. I’ve asked for a cancellation if one comes up before then.

How did your neuro appointment go?

Thanks Golfer. I’ve been told I might be able to have an MRI (if referred) in a wide bore machine which apparently is a slightly bigger machine. I shall try what you’ve suggested, thanks.

The anxiety is horrible isn’t it. I go from feeling quite upbeat about things, feeling like I’ve got my head around what may be coming and then I find myself crying into the washing up! It’s going to be a long couple of weeks I feel.

All the best to you, and thanks for the advice.

x