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CIS likely to become MS

Hello,

In december last year I woke up with tingly legs. 2 days later I had gone completely numb from the waist down with intense pins and needles in my feet.

A month later i was told i had a lesion on my spine just below my shoulder blades and the cause was unknown and i was diagnosed with CIS. I had a lumbar puncture and further MRIs.

This was back in March so i had presumed my lumbar puncture results were fine.

After seeing my neurologist this week he told me that, my LP was positive for O bands and i fit the criteria to be diagnosed with MS. He said that because I am currently stable giving me an official diagnosis at this time would not be helpful to me.

i will be having MRIS every 12 months and as soon as i have any new symptoms or lesions i will be officially be diagnosed and start treatment. He also told me i am a high risk for this happening. So i am currently in a state of limbo.

i just thought Id share this and see if anyone has similar stories or any support they found helpful.

what was all that about early treatment?

how much damage are you likely to accrue by waiting?

my best advice for support is to join your nearest ms therapy centre.

the support can be gained through the therapies but also from the other people there.

The MS Trust information on CIS clearly states that where a person is likely to convert to MS, starting treatment is a good way to delay conversion. See https://www.mstrust.org.uk/a-z/clinically-isolated-syndrome-cis#can-treatment-delay-onset-of-ms-in-people-at-high-risk

It seems to me that leaving you dangling in limbo, just waiting for another relapse to come along isn’t a comfortable or welcome place to be left.

If you would prefer to start a low risk disease modifying drug rather than wait, you could write to the neurologist as explain that you understand the NICE guidelines allow for treatment with beta-interferon, Copaxone or Aubagio where a person is diagnosed with CIS and likely to convert to MS.

Sue