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MRI - Nothing Found

Hello everyone.

I’m posting here because I’m at my wits end with my symptoms and after some amateur research I think I might have MS.

A very brief description of my situation. In 2015 I had an injury which resulted in an L4/L5 disc prolapse. Afterwards I was incontinent. I was sent for an emergency MRI but they didn’t want to do any surgery and they recommended physiotherapy, and after a year of this I made a lot of improvements. I had been experiencing numbness in my right leg and right arm however, and soon after, the right side of my face and throat. After another MRI scan in 2016 which I was sent to because the right side of my face was very numb, I was told that I had “unexplained symptoms” and I was dismissed. I thought the numbness was due to my back injury but I was told an L4/L5 prolapse wouldn’t effect the upper body, which is true, but it doesn’t offer me much seeing as it doesn’t explaining why I’m experiencing these symptoms. Well the numbness has been with me ever since, it’s always there faintly, but sometimes it comes on really strong. Basically it’s numbness down my whole right side which has changed how I walk and causes me sometimes to stumble. Along with this I get tingling sensations, shooting pains, vertigo, migraines, forgetfulness, urinary frequency and occasional slurred/mumbling speech. I’ve had a couple more MRI scans since the 2016 scan and I still get the same inconclusive results. A week ago I had a test where they electrocute you slightly to see how the nerves respond. I was very excited because during the test I felt a BIG difference between my left and right side. The results came back and I’m told they couldn’t see anything concerning.

So as I said, I’m at my wits end. I have these serious symptoms, which seem to get worse each year, and every doctor I see just sends me for an MRI scan, the scan comes back with nothing noticeable, and I’m dismissed. Which brings me here.

To be honest, I’m a bit sick of seeing doctors because I’ve been seeing them for years with these symptoms and nothing has happened so I’m hesitant to speak to a GP (it’s a different one each time) only to be dismissed. I’m hoping someone could give me advice with regards to exploring the possibility of MS with an expert in this field. Do you think my symptoms could be the result of MS? Who should I speak to? And which tests should I ask for seeing as how MRI’s have thus far not helped?

Any advice would be sincerely appreciated.

Thanks

first of all find a sympathetic gp.

they do exist.

try each one at your surgery in turn.

when you have indentified one as sympathetic, tell him/her what has been happening to you.

explain that you feel abandoned by medics and just want ONE doctor who knows your problems.

it’s the explaining the same stuff over and over that gets us down.

then ask the chosen one if you can see him/her regularly.

we know that the nhs is in crisis but it’s a waste of their time when you have to begin from scratch every time.

let the GP think hard and long about what your problem could possibly be.

bear in mind that it probably WON’T be ms.

there are many other specialisms and hopefully you can be referred to one that can help.

Hello

You’ve not been very explicit in some areas of your post. I’ll explain what I mean:

When you say you’ve had MRIs, have they been brain and spine MRI? Or just spine (as it was initially a spinal problem)?

As you’ve said you had an MRI following facial numbness, I assume this was a scan of the brain?

I imagine you’ve been seeing a neurologist throughout, who has conducted physical examinations, of reflexes etc?

And now you’ve had what sounds like a nerve conduction study?

If all my assumptions are right, and the neurologist has said there is no evidence of MS, then basically, you don’t have MS.

There are other diagnoses which can present in similar ways to MS. You could see your GP, talk through your last few years of symptoms and the negative tests you’ve had and see what s/he suggests. It may be that you should be referred to a different specialist?

If I’m wrong in my assumptions, then maybe you need to talk more with the neurologist and get more tests done, brain MRI with contrast perhaps? A lumbar puncture? Unless of course, the neurologist is certain you don’t have MS. In which case, you need to ask him/her what else could be causing the symptoms.

Sue

Thanks to both of your for your replies.

catwomanCarole58, I absolutely agree. Finding a sympathetic doctor who is willing to find out what’s going on is crucial. I just haven’t found that doctor yet and each time I have to explain all over again my symptoms to new doctors it feels like I’m in a hamster wheel just going round and round. I’ll keep looking though.

Ssssue, you’re assumptions are right but I’m not sure if your conclusion of, ‘then basically, you don’t have MS’, is necessarily correct. When they looked at my brain they looked specifically for a tumour, and the scans on my back have been focused on my degenerative disc. Although I’m sure they would have took a thorough look at the spine, my thinking is, I’ve clearly got a neurological problem, so they’re absolutely missing something. The same is true for the neurologist. The neurologist didn’t say ‘there is no evidence of MS’; a neurosurgeon dismissed my symptoms in 2016 as ‘unexplainable’ because my L4/L5 disc prolapse shouldn’t make my face numb, and the neurologist I saw recently after the nerve conduction study simply said she didn’t see anything noticeable or concerning (even though I felt a considerable difference during the test). She wasn’t specifically looking for MS although I’m sure she would have considered it. Point is though, I feel it everyday, sometimes remarkably strong, so one thing is for sure, they’re missing something. It might not be MS, fingers crossed it isn’t, but I can’t rule out possibilities until I know what it is. What brought me to this site was watching people on YouTube describing their experience with MS and in many cases the stories were almost identical to what I’m experiencing. Funnily enough I’ve seen stories of people saying they had MRI scans and were told that they were fine too, and so it took years for their eventual diagnosis. I was a very fit, very active person in the army before all this and I’ve since been medically discharged, so I’m hoping I’ve got something a lot more simple that they could do surgery on.

I’m going to take both of your advice. I’ll find a sympathetic doctor who will help me get to the bottom of this, and I will ask for a brain MRI with contrast, as well as a lumbar puncture.

Thanks for the feedback.

hi it took 16 years for me to be told i had progressive MS, from not having it to being progressive. However, it is odd, as usually with MS numb faces go and leave residual stuff. so your face may be numb one minute then you are left with tingling. It is usually one side.

did they do a head/neck MRI. the L4 usually causes pain in the thigh like sciatica my daughter has this.

the more you worry about it the worse it gets. if you had lesions on your spine they would show, but if they dont do the MRI in the right place they will miss it.

I had full head and spine and they found lesions and still dismissed it, and also went blind still dismissed it, but in the end i got there.

have you had lots of vaccinations being in the army? I did loads. Montel Williams took 18 years to be diagnsoed and he started like me.

if you can afford it go private with a consultation with neurologist. i had my MRI paid myself at cheltenham colbalt. it was quite intriguing the results, as i had them checked by my uncle who is a radiologist in italy who diagnosed me with MS from the film obviously not really just said he saw demylination and the high signal foci was small cluster of lesion, where the radioligist in UK said it COULD be demylination but more likely my age lol.

anyway stick with it, but dont obsess over it, as they stop listening. I never said i thought i had MS i just said heal me, please and finally he was able to give me a diagnosis. you cant just diagnose in the UK there is a long protocol. MS if its RRMS comes in wax and wanes read up the McDonald criteria.

sorry my answer is terrible all over the place i am tired but what i mean is dont give up, but dont just think its MS it could be lupus, lymes even. Lymes is the same more or less. they need to do the full spine.

it can be a tiring journey but if it is MS it will show itself. x