Undiagnosed.. ms a possibility.

Hi all,

I’ve known for years I have a neuro disorder as after the birth of my child at age 24 I got weird symptoms, actually had some obvious symptoms from my teenage years too.

I have been told by every neuro / physio / geneticist that I have brain / spinal cord damage, basically an upper motor neurone disorder.

Although MS has been casually mentioned, it has been thought more likely that I have a rare genetic disorder due to the presentation of my symptoms, I absolutely agreed with the experts, but I’ve gone through a lot of gene tests which proved negative. Saw my neuro last week and he said MS is a possibility now. He also says there’s a possibility I still have a genetic ataxia disorder too. Have ruled out other genetic disorders.

I did have an MRI when I first displayed obvious symptoms, but the MRI did not show ms lesions. All the MRI showed was a slight curve to my spine and some slipped disc or sumthing, but my neuro says there is no way this has caused my symptoms. Have never had a lumbar puncture.

My symptoms are;

Stiff and wobbly walk, more of a waddle , worse the more I walk or stand

Pain and cramping in my whole lower body, can be very bad if I’ve had to walk a lot

Issues with falling into the wall on stairs and I can’t control my legs to go up and down the stairs properly

Regularly lose my balance and stumble

my left leg buckles frequently

Cold hands and feet (they turn blue) and strange sensations such as numbness

Muscle spasms and jerks which cause my legs to kick out,

Feet turning in from spasticity… I think it’s called equinovarus, have foot issues in general as can’t wear high heels or many types of shoe due to my deformed feet and altered gait. I have to walk on the outside of my feet.

My hands have been shakey at times, can be bad if I’m tired, anxious or stressed. If I have to hold a bag of shopping my hand will shake loads, or sometimes when I’m trying to eat my hand shakes.

All symptoms worse in cold, but oddly enough I’ve since looked back and realised I have always become very ill in hot weather too. I quite often can’t stand in the shower for too long and end up having to sit on the floor.

I have hyperactive reflexes, spasticity ( increased tone), weakness, struggle to walk on my ankles but can walk on toes no bother. My heel/ toe walk is wobbly. My neuro said he got a weird result from testing my left hand last week, I’ve since found out it is Hoffman’s reflex , I only have it on my left side and he said this is weird. Who knows. Oh, I also can’t feel the pin prick test properly on my feet.

Soooo, I know if I DO have MS, it must be the progressive type. My cousin also has this type. Is it worth having another MRI? I’m scared of MRIs so don’t want it. Or a lumbar puncture? Anyone here have no MS lesions on first MRI? I really don’t know…I’ve had so many tests over the years and I’m fed up. Honestly feel like I won’t get answers, but I want to know as I have kids. Tried to ignore my issues for years but it’s getting worse now.

hi nev

you need answers so have the MRI.

don’t be scared, it’s noisy but does NOT hurt.

you could ask your gp for something to help, perhaps a mild sedative.

take music with you and the radiographer will play it through headphones.

ask for a foam wedge under your knees because i find it impossible to lie still flat on my back, the foam wedges really work.

if you’re lucky you may be able to use an open scanner but i don’t think there any many available.

don’t second guess your diagnosis, it may well be RRMS if it IS ms.

go on, nev. be a brave soldier!

carole x


I assume your neurologist has recommended an MRI and/or LP to explore their suggestion that it could be MS.

As Carole has said, if you think it might be MS, you’ll need to have an MRI. So, while they’re not pleasant, they don’t hurt and it’s the one test you absolutely cannot be diagnosed without. Neither can you be told it is not MS unless you have an MRI.

There is no reason why you’d have to have progressive MS if you were diagnosed, but even if you were, that doesn’t necessarily mean it’s the ‘worst’ kind. And 85% of people diagnosed with MS have relapsing remitting. Which means there are disease modifying drugs available to help prevent disabling relapses.

So, if you want answers to your problems, it seems that you’ll need to have the MRI. And if you absolutely can’t bring yourself to undergo one without it, then ask for a sedative.