Just an update peeps

test for Hughes came back negative but my sisters 3 tests are borderline positive and will be going to see a specialist in Manchester soon. So I am still in Limboland, my Nuero was not convinced I had matching symptoms so he was right, I just thought I had a chance of answers. Back to the drawing board and seeing Neuro in August for a review. I hope other regulars to the site are doing ok xx


I’m a newbie so don’t know your history but I’m sorry if you did not get the clarification you hoped for. Limboland is a strange & frustrating place - but the forum proves we’re not alone with it.

Love & hugs,


Hi you 2!

I`ve been in and out of limbo, been wrongy diagnosed with PPMS for 11 years, had my diagnoses changed back and forth with hereditary spastic paraparesis. Had so many tests over 15 years, I know how lab rats feel!

Hope you dont have a similar experience.

luv Polx

Its been 9yrs of symptoms but they are not as bad as some and my progression has been slow, thank goodness. Just fearful that it maybe psp or parkinsons. Waiting and seeing can be so cruel at times!!!