Just wondered if anyone else has a similar story I am 28 and was diagnosed with optic neuritis last year and have had problems with pain pins and needles and shooting pains ever since I’ve had 3 mri since this and have lesions on my spine suggestive of demyelination but non specific white matter on my brain I’ve recently had a diagnosis of non compressed myelitis and demyelination is a likely possibility i am waiting for a phone call with my consultant in March but not sure what this is suggestive of or if I will get a diagnosis of anything has anyone had similar or any questions I should ask regarding my results would be a huge help
Nat, i am no expert but at the time of my first incident i had 1 lesion on my spine and the brain MRI came back with non specific white matter (within the borderlands of normal) so i was given a diagnosis of CIS (clinically isolated syndrome). You may be told the same. It depends whether they can glean from your MRIs whether there has been 2 separate attacks (the McDonald criteria to diagnose MS requires lesions in time and space i think). In terms of questions, i would be asking whether the MRIs showed a consistent picture i.e. have the lesions presented on them all? or did some come after the first ones were identified. I would also ask about the treatment options. I didnt know it at the time but you can seek treatment for CIS. You dont have to wait to see if it evolves into MS. You might also ask for a lumbar puncture or the nuero may suggest this anyway. Seems a strange thing to ask for but you may as well find out what is going on now that you’re half way down the road. Good luck
Oneinthree has given you good advice. I would follow this up with asking the neurologist:
What does it mean to have demyelinating lesions on my spine but none in my brain?
(is that in fact what the neurologist is saying?)
What further tests might be indicated?
Would there be any drugs, particularly disease modifying drugs, prescribed at this time?
What other questions would the neurologist expect me to be asking?
Best of luck for March. If you have any new symptoms between now and your appointment of course, run them past us if you think that’s worthwhile. But certainly ask the neurologist about them.
just an update I spoke to neurologist the lesions in my spine have spread over the year I’m now being transferred to another neurologist at a different hospital for a diagnosis he wasn’t very helpful or answered any of my questions I was asking I will just wait for my transfer hopefully he can give me answers
Hi Bouds…I also had only spinal lesions (2 of) in cervical and thoracic at the time of my diagnosis in 2018! With likelihood that I have probably had MS 25 years or more based on past incidences. I must have some in the brain though even if they can’t be seen, as I have issues in my neck and throat affecting swallowing and speech from time to time, as well as awful TN type facial pain.
