I’ve just been to see the MS specialist neurologist who has confirmed I have CIS. About 4 lesions spotted on the MRI I had in June. This was following loss of sensation all down my left hand side back in April. I don’t feel like I’ve ever fully recovered from the loss of sensation. Left side always feels heavy and tingly. I’m very low one energy and motivation. So tired. Also a few bouts of loss of bladder control. I have another MRI and appointment in 6 months. I’m very grateful for everything they’ve done so far, but I’m left feeling flattened by waiting and still being in limbo. Dragging myself through life atm and I know I don’t have things half as bad as lots of other people. I’m booked in for cbt assessment in September which will hopefully help my outlook on things. I’m not really asking anything here. Just sharing that I feel crap and it feels like there’s nothing I can do about it. Xx
i don’t blame you at all.
why does there have to be such a diagnosis as CIS?
i was lucky and got a diagnosis of RRMS after just one MRI.
talking to friends who have more experience, i started to remember previous episodes going back to my teens (i was diagnosed aged 50). so i reckon my MRI must have shown old and new lesions.
your symptoms don’t become any easier to live with whatever they call it.
maybe glittery unicorns could be another “realistic” name.
have a good old scream and swear before you burst.
just wanted you to know that i understand.