For context I am 24F, no family history but have had EBV and significant vitamin D deficiency as a teenager (risk factors for MS). Live in the UK so under the NHS (also working clinically in the NHS)
I have had two separate episodes in the last year of a blurry right eye lasting approx 6 weeks, and on my second episode I also had a positive L’hermittes sign and speech disturbances. My GP has been worried about MS so referred me to neurology. Kind of assumed I have MS due to the text book nature of my symptoms.
I saw neurology yesterday, who said they wouldn’t suspect MS and said it’s likely wear and tear on my spine?? I thought this was quite odd for my age, and wouldn’t explain why I’ve had two separate episodes that I completely recovered from, and wouldn’t explain the eye symptoms.
My physical exam was good, however not experiencing symptoms currently so unsure whether this is relevant. But they said this was reassuring
Luckily whoever triaged my referral booked a head and spine MRI just from the GP note so they were clearly concerned due the history of symptoms.
I’m worried that this neurologist isn’t taking me seriously, I assume if I have MS with symptoms something would show on the MRIs? But would I also need a lumbar puncture. Just worried about getting fobbed off and waited so long for neurology.
Wonder if anyone had similar stories?happy to hear any thoughts
Hi @k8elizabeth it’s difficult not to feel anxious about the possibility of MS but in my case - no I didn’t have a lumbar puncture. Im not quite sure why you say that you have textbook symptoms ( my first real symptom was loss of most of vision in my right eye. The vision did return but it took weeks - maybe a couple of months.
try to take heart from the fact that you will get an MRI scan and to be honest, I hope your symptoms are a result of something less serious than MS
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When I say text book symptoms meaning that my symptoms have been very much inline with every single MS page states as early symptoms “blurriness in one or both eyes” and “Lhermitte’s sign” and “pins and needles” I have had over the last year in two seperate waves
Obviously I hope this is not MS, but when that’s what I’ve been told they’re looking for , to then suddenly be told it’s unlikely is unsettling
The problem with diagnosing MS is that the symptoms are varied and not specific to MS ( if you check the websites of the MS Society and the MS Trust they do explain that symptoms can be a result of other conditions). The results of MRI scans can provide a pretty definitive diagnosis. Some but not all neurologists seem to want a lumbar puncture as well
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Hi k8elizabeth, thank you for sharing your experience. It sounds like you’ve been through a really worrying time, especially with symptoms that seem to come and go and with MS being something you’ve understandably been concerned about.
I can understand why you feel unsettled after the neurology appointment, particularly when your symptoms improved and your examination was normal on the day. Some neurological conditions can be difficult to assess when symptoms are not currently active, so it’s understandable that you want clear answers.
It’s good that you have been referred for MRI scans, as imaging of the brain and spine can provide important information when investigating symptoms like visual changes, sensory symptoms, or possible neurological episodes. In some cases, doctors may consider further tests depending on the MRI findings and the overall clinical picture.
Try not to assume the worst while waiting for results, but also trust your instincts and make sure your concerns are being addressed. If you feel your symptoms haven’t been fully considered, it may be reasonable to ask your neurologist to explain their reasoning, what they are looking for on the MRI, and what the next steps would be if the scans are normal.
I hope your MRI gives you some clarity soon. Waiting for answers can be one of the hardest parts, so try to be kind to yourself during this process. Wishing you the best and hoping you get the support and reassurance you need.
Hello @sscareuk1 are you someone with MS or simply posting on behalf of the company Serene Soul Care - care homes and care at home services
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