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Normal MRI before diagnosis?

Hello

I’m new to the site. I’m just wondering how everyone’s symptoms manifested before diagnosis and if anyone had a “normal MRI” before diagnosis?

I’m a 37 year old mum of two, 2018 was my fittest, strongest and healthiest year after having my children, I felt great. January 2019 came along, I had a cold sore with tingling to the left hand side of my face, left arm and left leg. Periodic numbness in these areas and significant weakness. I went to the GP to be sure I didn’t have shingles because my boss is pregnant. The GP was concerned with the grip of my left hand being very weak, he got several different opinions from other Drs at the surgery and called a neurologist while I was there… I was baffled and said “so is it shingles?” nothing else had entered my head at all. I was given medication for the cold sore and a referral to the Neuro clinic at the local hospital. My symptoms eased a little, still not “normal” but enough for me to think I was wasting the consultant’s time, he carried out his examination… I had altered sensation on my left side, brisk reflexes and was referred for a MRI.

I had another bout of symptoms (going back to square 1) with a sore throat and period of feeling unwell. I then attended a MRI for brain and cervical spine with and without contrast, both came out “normal” and I was given the diagnosis of most likely Postherpetic Paraesthesia. I was relieved to have a normal scan result but then with no real diagnosis, plan or treatment I felt like a fraud! I went back to the GP and had a full set of blood tests and everything came back fine, so great… I try to get back to full strength. I was exercising again, changing gear in the car was ok, carrying the kids school bags ok most days and I could get through a body pump class (ish) using the lowest weight… brilliant I think things are looking up.

Last weekend I went to an exercise class and the following night, out for the evening to celebrate a friends 40th (unusual for me these days), no dancing, a little drinking. The next day utter fatigue, thought maybe because of the late night but I was home by 12pm and sober. The day after all my symptoms are back with a few added extras, left side of my mouth drooping when talking, make-up brush felt like needles, water felt like shards of glass when washing my face, electric shocks in my face… I felt utterly deflated. The day after that my arm and leg are weak again, feeling like jelly and I’m walking strange like the floor is soft, I go back to the GP and cry in his office!!! I felt ridiculous all the test results coming back are telling me I’m ok, there is nothing wrong!! But I can’t function like I used to.

He has referred me back to the hospital, I’m so scared at the moment! What if everything is ok and this is just me now, what if there is no label, I feel lazy and useless! I now have a burning sensation on my left forearm and I feel like insects are all over the left hand side of my face. I’m agitated with the children over the smallest of things and I can’t concentrate on my studying (I have an exam in 3 weeks), I feel like I’m in a fog and I’m screaming from the inside to get out but no-one can hear me!

Thank you if you have got this far and I’m sorry for the novel, I don’t like to burden my friends and family and without a name for my problems I think it’s hard for them to understand or believe!

I was wondering how many people have had a “normal” brain scan and go on to a MS diagnosis in later years?

Many thanks

Lisa x

Hello Lisa

If you have neurological type symptoms but a clear MRI scan, then you don’t have MS. MS relapses cause lesions (scars) in the brain and central nervous system. The contrast dye would make any such lesions show up more clearly, and any inflammation would be seen.

If the neurologist was bothered that you might have lesions only in your lower spine (unlikely given the symptoms you’ve experienced), then they could MRI the entire spine as well as the brain and cervical spine. It might be worth asking this when you see the neurologist again.

There are other diagnoses that could look at bit like MS, for example Functional Neurological Disorder (FND). Have a look at What Is FND - FND Hope International

When you see the neurologist again, ask the questions that are rattling round your brain now. Start writing notes of important questions and details about the symptoms you are experiencing.

Best of luck

Sue

Thank you for your reply Sue, I really appreciate it.

I will look into the link you sent and ask about it at my next appointment.

I supposed it’s the case with everyone it’s the unknown that is the scariest thing, not knowing what or why!

To have symptoms, pain, fatigue and frustration with your body that was working perfectly fine a few months ago and not know when or if it will ever get better is worrying, it’s hard for people to understand what it happening to you (work and home) without putting you in a box.

Thanks again for taking the time to reply.

Many thanks

Lisa

Lisa I asked my neurologist that very question after my mri head scan - which was clear. He told me that it would only be a matter of time before a lesion is evident. I had a positive lumbar puncture (unmatched oligoclonal bands in CSF) I also had blood taken to rule out other causes which were negative. I had a mri of spine which was clear also. None of my scans were with contrast. I am now going for the visual evoked test. I also thought that no lesions meant a definite Not MS diagnosis. I hope to prove this theory right xx

Thanks Rosie, I wish you good luck with your appointment. I haven’t had a LP yet. Am I correct in thinking you had a positive LP for MS criteria, but with a clear MRI you still have not been diagnosed, sorry I should probably read some of your past posts. X

My understanding is that to make a diagnosis of MS the McDonald Criteria must be met. I think that even with a suggestive lumbar puncture, further clinical findings are required. MRI results are mostly used in diagnosis. I think it is however possible that on an initial scan few or no lesions could show, hence why a diagnosis of CIS (clinically isolated syndrome) is sometimes given. Sometimes those with CIS do go on to receive a MS diagnosis at a later stage, probably due to another attack that presents itself as an MRI finding.

With MS being something that’s not always straight forwards to diagnose and with symptoms crossing over many other possible causes, I think that is why some people remain in limbo for so long. If only there was a simple blood test but sadly not.

take care and hope you feel better soon.

Thank you for your reply befuddled I really appreciate it. This year is the first time anything like this has happened to me, so It’s all very new & whatever it is, in the early stages. I’ve always been healthy, fit & strong. Hence all my test results so far show, I’m finding the lack of strength & energy very hard to deal with, as i’m sure is the case for everyone. Reading people’s stories I seem to have been assessed & scanned very quickly all within 3 months of my first symptom & i was wondering whether lesions take time to appear after prolonged bouts of symptoms, therefore not always being seen on a very early scan. The neurologist did say we might not see anything and schedule more at different intervals. I will make a list of these questions as Sue suggested, I felt like a fraud at the first appointment and that I was wasting his time so didn’t really ask any questions at all. Very silly. Thanks again x

Don’t feel silly or a fraud. You know your own body better than anyone else and you know when something isn’t right. I’m very much in a similar position to you as only started with symptoms in Jan this year. I’ve had optic neuritis and weakness on my right arm and leg. It started with pins and needles but has become more painful with burning sensation in my hands and feet. My legs still feel numb and my right leg spasms too. The fatigue at the height of my symptoms was unbelievable, it was worse than having a newborn baby (and my youngest was the worst sleeper ever!). I just couldn’t fight it and would fall asleep on my work laptop or at the dinner table. It has eased now and I’m just tired which I can cope with. I’m waiting my spinal scan results. I’d feel a lot happier if all my symptoms just went away and I could get back to my hectic life and feeling myself.

I go to bed each night and tell myself I’ll feel back to normal in the morning but it’s not worked yet and my positive thinking is running on low self esteem. For now it’s limbo land for us both and I’m hoping that we get back to our normal every day lives without further problems. MS is certainly not on my wish list but if it is my fate, I think I’d rather just know now so I can adjust my sails accordingly and battle the storm ahead.

take care

G x

I completely agree, I try to talk myself out of the symptoms on a daily basis, but parts of my body just stop working if I push too much. What I wouldn’t give to be me in December supper fit and strong, my aim for this year was a 6 pack for the summer!! ha ha ha I’m just aiming to walk without a limp and be able to carry a shopping bag down the road! :slight_smile: Good luck for your appointments and I too wish we both wake up tomorrow back to “normal”. Many thanks for your kind, reassuring words they mean a great deal. Lisa x

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Hi Lisa

I just wanted to reply to say I’m in a similar position - also a 37 year old mum of 2 (though they’re both still v young) and I’ve had a clear mri despite having had a range of neurological symptoms since last year that are not going away :frowning: mine are mainly bladder and sensory problems, with a bit of odd vision too.

It’s so tough not knowing what’s going on in your body, my neurologist was pretty dismissive so I also felt like a fraud, but then the symptoms are real! What are your next steps? I had an evoked potentials test that also came back as normal so I’m kinda just putting up with everything atm and trying to stay positive / manage things! Planning on trying some acupuncture but that’s really for the bladder thing…

I’ve also come across FND, my neurologist didn’t mention it but he did say my situation was not uncommon!? (I guess he meant unexplained symptoms). Not v helpful tho!

Wishing you all the best and feel free to private message me if you’d like to.