Hi there
I had optic neuritis in June and had an MR Brain which showed one non specific lesion. I saw a neurologist on Friday who after a physical examination has suggested an MR brain and spine and strongly suspects demyelination.
I’m 37 so was just wondering if anyone has a similar story to me where they had one lesion on an MR brain and possibly had more lesions on their spine?
most of my symptoms are pins and needles on my left leg and left hand, jerking in my right leg, right hand tremor, blurry vision in left eye, fatigue and brain fog. I’ve had 3 distinct episodes in the past year where I’ve had a combination of these symptoms before clearing up again.
just concerned what else it could be if not MS especially when only one lesion on the scan in June.
many thanks
That sounds broadly very familiar to me, I’m afraid. I don’t know about lesion numbers, but when they did an MRI of my brain and cervical spine, they saw what they expected to see. I was about the same age as you.
Thanks for the reply.
yeah i have had to go private as GP just kept doing bloods and saying nothing wrong then ever after optic neuritis episode they were like there’s only 1 lesion in your brain you’re fine? Wasn’t even a neuro-radiologist who reported my scan so had to use my fiancés private health insurance to get a proper assessment so now waiting on scan of brain and spine so hopefully have a better idea what is happening. Clinic letter from Friday states ‘quite suggestive of inflammatory demyelination’.
just horrible being in a weird limbo of being told yeah you probably have MS or similar to actually being diagnosed. Then the thought of if not diagnosed then what will I be diagnosed with if anything.
Hi,
I am in a very similar situation to you. I also had optic neuritis in June. I have had an MRI which has shown one lesion in my brain and 2 in my spine. Also have been struggling with fatigue and numbness and tingling in the hands and feet.
I am now at the lumbar puncture stage (having it on Tuesday). I’m fully expecting an MS diagnosis. I’m not sure what else could be causing it, I did have some blood tests to rule out some other causes of optic neuritis, I think they were Aquaporin and ACE level tests.
I hope you get some answers soon.
So sorry you are going through this!
I will hopefully be getting my scans soon. Not heard yet. Only had the brain in June and now having brain and spine so just hoping they will come to a conclusion after that but also know lumbar puncture might happen.
hope the LP goes as well as it can and thinking of you! Just horrible being in limbo isn’t it