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Waiting for MRI

Hi. This all started a week ago today. I was out with my boyfriend. I kept mentioning my eye hurting and I had used some eyedrops for conjunctivitis but it wasn’t getting any better. I had looked in my eye earlier that day and saw a white spot. He got me to ring 111 and they told me to see a doctor within 12 hours. We went to the nearby A&E, waited 4 hours then a doctor told me I had a corneal ulcer and to go to Moorfields the next day.

I went to Moorfields the next day. The nurse who saw me was a bit concerned that I had bells palsy on one side of the face. When I saw the doctor he noticed it as well. He told me to take antibiotic eyedrops (stronger ones) day and night. I mentioned the “talking out of one side of my face” people had commented on for the past year. He also did some other tests. I think I did well in them except for the tandem walk. I couldn’t walk heel to toe without losing balance a lot. My reactions are fine and in the right place but balance is bad. I also mentioned that I had a few vertigo attacks last year (that led to nystagmus and a bit of tinnitus for a short time) but I didn’t go into detail. He suggested I should get a brain scan which I was a bit shocked at.

Another doctor I saw on monday wrote a letter to my GP asking for me to get an MRI since they decided not to scan me then and there. I mentioned some of my other symptoms to him - going to A&E twice because of chest pain, small patches of hot skin on leg and false wet patches in another area. A slightly numb scalp. A (I have found out it is called)clonus in one leg.

My GP saw me the next day and was a bit overwhelmed. She doesn’t know much about neuro but she was getting excited about the letter I gave her. She got a referral faxed through to the nearest hospital so I’m waiting to hear something.

I have come to this forum by googling my symptoms. I think I might have MS. Can’t tell for sure until I have an MRI but it would make sense.

Some of my symptoms seem to come and then completely go, all of them I think except for the balance, the mild bells palsy and the clonus. I’m not too worried about the others but is there any way to get rid of “permanent symptoms” like the facial paralysis (if this is MS)?

Hello and welcome I’m afraid I don’t know the answer to your question about Bells Palsey except to say I once had it after having gone to the dentist and when she gave me an injection she accidentally touched a nerve and it lasted for me for about two weeks. I never had any treatment for it, but there may well be. Maybe a trip to your gp and ask them if something can help you. Sorry to hear you are having to go through all this and hope you get some answers soon. Janet x

Hello and welcome :slight_smile:

It certainly sounds like something is going on so it’s great that you’re having it properly investigated now. Whether or not it’s MS may take a while to work out as there are actually quite a lot of things that might be causing your symptoms, but hopefully the MRI will be a big step towards getting some answers.

If it is MS, then it sounds like it would be relapsing remitting MS (RRMS) because some of your symptoms have come and gone. In RRMS, new symptoms can continue to improve up to a year or sometimes even more after they start, but it does vary by person. It also depends on what the symptoms are because they don’t all respond to meds or therapy, e.g. there is no treatment for tinnitus so if our body doesn’t fix it, we are stuck with it, however neurophysio exercises can help some people with balance and neuropathic pain (e.g. hot patches) can often be really well controlled with meds. Clonus is one that can respond to meds too, e.g. I take baclofen and pregabalin to control mine.

So it would certainly be worth getting your GP to refer you to a neurophysio about your balance. I’m not sure if there’s anything that can be done for the Bell’s Palsy, but the neurophysio may be able to help with that too. Your GP may be reluctant to give you meds for the clonus until you’ve been diagnosed so that might be a question for your neuro when you see him/her.

I’m afraid that most GPs didn’t take neurology as an option after their medical degree so it’s pretty unusual to find a GP that knows much about it, however I reckon it’s more important to have a GP who is supportive and willing to learn so it sounds like you have a good one :slight_smile:

Hth :slight_smile:

Karen x

Thanks for your kind replies, yes I think if I do have MS it is the RRMS. I have been suffering with a cold and that might be why I’m possibly relaspsing. I also dropped out of a half marathon as I seem to get ill a lot after running. I hadn’t really noticed this much but when I put a symptom list together for my doctor it was very clear to me.

For the past couple of days I have been waking up with lower back pain. I have taken co-codamol which seems to help. It is worse in the morning. The pain feels more like spine trauma than normal back pain. I remember when I fell down the stairs as a child and landed on my back it felt a bit like this. My legs also feel very heavy awkward, and a bit painful. The pain gets worse when I bend forward or sit up but no position gives relief.

I still haven’t heard anything about the neuro appointment so I’ll chase up on tuesday (it’s a bank holiday) Thanks again

I haven’t had a great time getting an MRI booked at st george’s. They keep losing my referral. I have been coming back every tuesday, as initially I was told “within a week”, then I was told they lost my referral but “you’ll hear within 2 days” Now a week later I am just being told “we have your letter” but it won’t be before june, still no letter.

I had a follow-up at Moorfields (who have been amazing) booked for 3 june and they are expecting to talk about the MRI results. The local hospital have also told me (well the receptionists have been following up for me) that Moorfields could do an MRI. It’s difficult though, because my symptoms don’t involve my eyes really. I wonder if they will do it. They could have done one originally?!

I am considering just paying for an MRI privately. I could get one at vistadiagnostics for around £200. That way at least I can have it for my appointment and stop obsessing. It’s not really in my nature to do something like that but I do have the money. Can anyone recommend them??

In other news, I think my “relapse” is over now :slight_smile: Feeling much better.

I wouldn’t recommend having a private MRI that only costs £200, mainly because seems far too cheap for the amount of scans that you should have if ?MS is to be properly investigated.

The bare minimum I would recommend is brain and cervical scans (ideally with 3mm slices or thinner) and, since you’ve had what might be ON, you could do with an orbital scan too. I can’t see that costing less than £500 in a decent scanner.

I could be wrong though!

If you ring and ask them exactly what the £200 gets you and post it on here, I can tell you if it’s worth doing (in my opinion of course and I’m not a neuro or radiologist - and it’s not my money!).

Kx

In the end I paid £250 and got the scan the same day as I wanted it all over and done with before a funeral and a holiday. I really appreciate your advice Karen but I was worrying so much, my pulse today was 103 :frowning: I needed to know

The machine was 3T and took 5mm images.

I saw a neurologist today who suspected MS when I told her my symptoms. She was very careful to say it would be a long diagnosis. After some talking and prodding she looked at my MRI results.

My MRI results were normal “with mild and longstanding white matter changes”

“Minor signal changes are shown in petrigonal white matter with mild prominence of the underlying ventricles. This is longstanding and may date from in utero or early infancy. Elsewhere the brain is normal in appearance”

The doctor told me that it is unlikely I have MS based upon this result, which is good news. They want to take a lumbar puncture and some kind of electrical test as well as blood tests which will be sometime in the future.

In other news - I am definitely not over my attack (which might be clinically isolated as the doctor mentioned) but nothing is showing up on MRI. It’s definitely a relief not to be told I have MS but also slightly puzzling. The doctors were very interested and concerned in my facial paralysis and I think this might be why they ordered the follow up tests

It’s a shame it was 5mm slices, but good news that everything looked fine (the old changes excepted).

A clear MRI can’t rule out MS, but it does make it less likely. It also helps to narrow down the possibilities. Hopefully the other tests will help the neuro to work out exactly what’s going on.

Kx