Limbo - new diagnosis

New diagnosis and before diagnosis
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Hi guys, not sure if anyone has gone through the same or similar but after speaking to the helpline earlier, they thought it might be worth putting this on here see if anyone has had similar experiences.

I had no idea or inclination that MS was even a possibility for me until November 2024. I had been sent to the eye infirmary by my optician for suspected optic neuritis that i had stupidly mistaken for a burst blood vessel after a bout of sickness.

Had my MRI on my brain in the end of November and then met with the optic-neurologist who was the first to mention the possibility of MS, citing inflammation on the brain as the concern and said she would be referring me to a Neurologist.

Seen the Neurologist in january, expecting the appointment to be nothing more than a fact finding mission and to receive information about a lumbar puncture. Instead, she did a short physical and then went through my mri scans in more detail explaining that they gave her enough information to allow her to official diagnosis me with RRMS.

Plan was to do a spinal MRI to see if any lesions there and book an appointment with an MS Nurse. She also explained that she would need to bring up my case at the next multi discipline meeting with other consultants to confirm what treatment i would be eligable for.

Obviously not ideal but i was grateful for a very short wait in getting from A to B. I knew that some people had to fight for years for a diagnosis so felt lucky that this wasnt me. I also felt comfortable with the plan we had and was coping well i thought with the news.

Spinal MRI booked for the end of feb and MS Nurse booked for the 10th feb.

Fast forward to last week and the Neurologist called me to say that she had felt that one of the lesions on my brain looked “unusual” even for MS and after bringing it up at the multi discipline meeting thing, the other Drs had agreed. Neurologist said both on the phone and in her follow up letter that she is still confident that is MS but now needs to rule out any “dual pathology”.

So now the plan is on pause whilst they investigate. MRI was pushed up to last week and they did both brain and spine and she has also asked for a lumbar puncture which is in March.

Has anyone else had similar issues with an usual looking lesion? Or getting a diagnosis and then it being questioned to a point after the fact?

Thank you in advance x

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Not me. I’m guessing that you are now feeling very worried? It would help if the medics provided all of us with more info and by the sounds of it you have been provided with little or nothing. You could contact them to ask for more info - what are the possible reasons for the unusual looking lesion?

On a more positive note, I understand that in fact many people develop lesions from a range of non MS reasons (concussion being one and I’ve a vague memory of Post Traumatic Stress Disorder sometimes causing lesions) and have absolutely no symptoms .

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Hi. My story is similar. At end of October I had eye issues and ended up at a neurologist, had a brain MRI and had an MS diagnosis. Then i went for lumbar punctures and spine MRI as one of the lesions looked unusual. After that they were able to rule out other issues and i have proceeded with ocrevus infusions to treat my RRMS. I hope it goes well for……

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Thank you for commenting.

I think its more a feeling of unease than worry. I had a short period of knowing what i was dealing with and now to have that taken away has left me feeling uncomfortable with what could come next.

I had asked what else could cause “unusual lesions” and there was a brief comment on lots of things including other autoimmune issues but it was just kind of left there. I think there was a reluctance to commit to anything specific.

Im hoping that the neurologist contacts me once she has seen the mri and doesnt wait until after the lumbar puncture at the end of March to give me an update.

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Well none of that sounds like fun and I am sorry that you are having a confusing time. So much to get your head around, and then when you think that at least you’re getting some clarity there’s another unexpected uncertainty for you to deal with. That’s really tough. I hope that you reach calmer waters soon and life starts feeling much nicer again.

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