Waiting for MRI following problem with vision

New diagnosis and before diagnosis
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Hi all,

I am new here and came across the forum whilst researching into my own symptoms.

I was admitted into hospital following an eye test, which I booked because I have been experiencing blurred vision in one eye. I was seen by an ophthalmologist who initially said I have inflamed optic discs in both eyes - this led to me staying in hospital for a CT and Lumbar Puncture, as he thought I had idiopathic intracranial hypertension. I am mid thirties and slightly overwieght, so I fit the demographic. However he said the swelling was worse in one eye and it was noted by the medics than I only have symptoms in one eye. I was meant to stay in hospital for an MRI, as the next major thing to rule out was MS but at that time a family member was seriously ill and I was going to have to wait over the weekend, taking up a precious hospital bed whilst not receiving any treatment. This to me seemed far worse than waiting at home, so I discharged myself so that I could visit my ill relative.

The doctor looking after me sent the requests for MRI and another eye appointment. I have since had the eye appointment which confirmed the swelling is only in one eye and am now waiting for the scan. The ophthalmologist has also referred me to neurology to be dealt with as he felt my case is no longer an issue for the eye doctors.

The other thing to add to my waffle is that I have been treated for anxiety and panic attacks following a bereavement for several months. One of the panic attack triggers was problems with my eyesight, meaning I was finding it difficult to focus when presented with lots of visual or sound stimuli, for example in a supermarket or a busy street. This is a common panic attack trigger, but since my recent eye symptoms have come on I have noticed that the same visual disturbance happens but without the panic attacks.

I have had a variety of other symptoms that I have put down to anxiety - excrutiating tinnitus (which often leads to headache) which often occurs following more than one sound (ie group conversation), headaches, inability to single out speech when in a group of people. What I would describe as extreme fatigue - I am normally pretty energetic, but have at times found walking up the stairs in my house a drag (and this is one of those times, I feel like my whole body is too heavy to move). I have also had lots of tension headaches and currently have light sensitivity. This has seemed worse since my hospital stay, which was just before Christmas - of course I did have a lumbar puncture which can have side effects. I have had a strange recurring pain in one elbow, which sometimes makes it difficult to straighten my arm.

I was off work for several weeks and returned a couple of months before Christmas, but found this incredibly difficult. I did it on a phased basis but still struggled and it was during this time I discovered the visual disturbance. I am off sick again because I find my working environment, which is a busy office, horrendous.

I am going to see my GP this afternoon for advice. The above has all been put down to anxiety, but I am now starting to wonder whether it could also be something else. It is all incredibly confusing and the lines are blurred because of the multitude of issues that can be anxiety, they can also be physiological. I have had CBT for the panic attacks and take medication for anxiety.

Has anyone else found this? Apologies for going on a bit, I think typing this is useful therapy too. So for those who do read this - thank you.

xxx

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I should add that I know chances are my issues aren’t due to MS. My GP wasn’t able to help much, but I do have a fit note advising my employer to make adjustments for me when I go back on Monday.

My CSF pressure was normal from the lumbar puncture too.

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It’s great news your lumber punture came back clear I think anxiety is to be expected right now and you’re likely on high alert. Do you have a date for your MRI?

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not yet, I’ve been told it should be about three weeks. Thanks for your response x

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Got my appointment through - 22nd Jan for an MRI Orbit and MR Brain and Cervical Cord.

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Had MRI brain and orbit, now just waiting for my neuro appointment in two weeks for the results. After reading some of the other experiences on here, I feel very lucky that within a month I have had both lumbar puncture (which I haven’t had full results for) and MRI.

Still have visual disturbances, still having persistent headaches and still struggling with fatigue. All of which is hard to explain to my employer.

I am trying hard not to focus on how I am feeling or the hospital doctor’s concerns that I have MS, but when doing something for an hour or two leaves me completely exhausted it is very hard to ignore.

The day after my MRI I was completely ruined. My speech was all out of whack - when talking if there was a conversation in the background or on TV, then words from that kept creeping into mine. I found it quite amusing (and not the first time this has happened) until I was unable to remember what I was walking about in the first place!

I sound like I’m moping don’t I. I apologise and I guess I am just having a bit of winge - I have been keeping positive at home as my partner is starting to get very worried about me.

Hope everyone else is ok x

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Hi KB

Hope you’re feeling better. Its quite ok to have a winge - besides you’re not winging you’re worried!

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Hi HB, thanks for your kind response x

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<>Hi Karon, this site is very much like a welcome waiting room, isn’t it? I just had a VEP today for vision disturbance and eye pain. I also get fatigue among several other symptoms and am half in limboland with an initial diagnosis of FND (which is being treated as a variant if CFS/ME) and a personal question mark about the possibility of MS…though since my MRI came back clear, they were unwilling to give me an LP and the second neuro unwilling to even put a name to my collection of somewhat disabling symptoms.

I know what you mean about muddling words. I do it too, often during my daughter’s storytime or when trying to get her ready. I once told her to ‘shuut on your poo!’ I’m following my gut feeling - we know our bodies and when something is not right. Good luck :heart:

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well I’m lucky, my MRI was clear which was a huge relief. The neurologist has asked the eye consultant to look at my eyes again and suggested neuro and eye Drs may need to work together to establish the cause of my optic disc swelling. He has also requested another CT scan as a CT Venogram.

The interesting part is that a few weeks later I received a letter from the neurologist to the opthalmologist. I was copied into it, as was my GP.

It states that the CT I had when I was an inpatient was requested as a venogram, but a plain head scan was done instead. SO I thought I was waiting for an appointment for that too. As nearly a month has passed I made some calls to chase my CT and eye appointments up and found out that radiology have rejected the CT request, because I had one in December. When I explained what the letter said (about it being the wrong scan) I was told that enhanced images were already taken so further medical review is required. This is all to rule out venous sinus thrombosis. If I hadn’t made these phone calls I would never have known that there was not going to be a CT - I’ve found that if I don’t chase things up then nothing seems to happen. Whilst I understand that I am no longer viewed as a priority I do still find it frustrating that I appear to be lost in a huge and complicated system.

My question is, would the MRI not have been sufficient to detect sinus thrombosis?

In the letter the neuro asks whether the optic disc swelling is new, or something longstanding like drusen. Anyone out there affected by this?

I’m going to speak to my GP later too, who may be able to shed some light on the processes going on here.

If you are waiting for appointments chase them up folks!

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Well the decision is now that my optic disc isn’t swollen. Just had the electrodiagnositcs - including the VEP. Results next month. Woooo.