Clinically isolated syndrome in limbo

Hi I’m new last February I had an attack various tests MRIs I have lesions on my brain , since then I have struggled with my left side pins and needles etc , I have recently seen my ms nurse and am currently diagnosed with the above
I feel like they may just think I’m putting it on
I just feel a bit lost
Currently waiting for a spine mri
Brain mri
To see opthamology and to see the pain management clinic
There is also talk of a lumbar puncture as my last results were destroyed I just am feeling like I’m in limbo
My left eye has began to droop
Which was in hospital with they just said it was due to whatever is going on
I trying to just ignore it as I feel like I’m in limbo and just feel like I’m a nuisance
Sorry for the long post

Hi tthompz

The Limbo phase is frustrating as heck! Many of us here know the feeling well, unfortunately.

At the end of the day, you know your body, and you know when something is not right. Hang in there, and don’t let anyone grind you down. It’s far too easy to start to doubt yourself when it feels like everyone else is doing so. You might be in limbo for a long time, so keep at them to get a definitive diagnosis - I had to resist the urge to say “See - I told you so!” to my Neuro when the MS dx was finally made.


Thankyou !!
Yeah I’m starting to really doubt myself x
One of the consultants said they think my brain is just being hyper sensitive
Which made me just think
Your putting it on

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