No diagnosis

I had weakness and what I can only describe as dropped foot feeling for a number of years, I was also falling regularly. Previous MRI and Nerve Conduction test were normal. I lived with the symptoms for many years But for the past 12 months previous symptoms appear to have got worse to the point where I feel I need the help of a walking aid. Symptoms at present are extreme weakness and heaviness in my legs with stiffness at the bottom of my back and tops of my legs, I also have double/blurred vision. My recent consult with neurologist was rather frustrating as although he referred me to have another MRI and Nerve Conduction Test which he was sure would come back clear. I am frustrated as I just want to know what’s happening to me.

I know hun…I was in and out of limbo and was also wrongly diagnosed! Hoped that hasnt disheartned you!

I had the same mobility problems as you, but never had any vision trouble.

None of my 4 MRIs, 2 LPs, 2 EMGs, a VEP and oodles of blood tests ever proved MS, nor anything else! But what they did prove was that I didnt have any tumours, HIV, Hughes Syndrome, Lupus, etc.

The only thing they were left with was;HSP

Hereditary spastic paraparesis.

This is a little known condition which affects around 3 in 100k people. It doesnt usually affect the eyes. I do have severe hearing loss on one ear…which is rare, but can happen.

You have a right to know what is wrong with you, but sometimes, it can be hard trying to get to know.

Hang in there hun, yeh?

luv Pollx