Not sure what's wrong with me

Wondered if anyone could give me some advice. Things started with me about 18 months ago. I’d had numbness for a few weeks in my left thumb then over the course of a couple of days my entire left arm went numb. I went to gp who did an emergency referral to hospital where I saw a stroke specialist. I was given an mri scan of neck which was clear but the numbness and severe weakness continued. It left my entire arm and concentrated itself in my fingers, appearing also in my right hand fingers and toes, at some pints traveling up arms and also patches in my legs and face. I think my gp sent me to every department possible. I’ve had nerve testing and a further Mri of the brain, blood tests the lot. At the start of this year I was put on a low dose of pregabalin and for a few weeks it helped but I’m back to square 1 again, constant numbness in fingers and toes, very poor grip with left hand, very reduced strength in left arm. I’ve been back to gp who has increased the medication and said she’d refer me back to neurology.

i feel like a fraud as I’ve not been diagnosed with anything and to all I look healthy but it’s getting so wearing.

has anyone else been round the houses before a diagnosis with anything?


Hi, I spent a long time in limbo…I presented with classic PPMS symptoms, yet no test ever proved it. I have a whole barrage of tests and re-tests too.

I had different problems than your`s, which were mostly mobility related.

I was mis-diagnosed with PPMS, then that was changed to HSP…another condition which affects mobility.


Many people spend a long time in the same position as you and they come on here to see if anyone can recognise the group of symptoms you’ve got. The problem with MS is that firstly it’s a very individual little devil, no two people have the exact same group of symptoms, even though many of us share bits and pieces of our disease. And secondly, it can be very sneaky, sometimes people are left in ‘limbo land’ for years, being sent backwards and forwards from GP to neurology and back again.

What you have to get your head round (and the people around you too) is that what you experience is real, you are not a fraud just because diagnosing what’s wrong is a bit difficult, and eventually you’ll find out what that diagnosis is.

It may be MS, or maybe not, perhaps not even directly neurological in origin. Regardless, you will find sympathy on this forum, and people who’ll try to support you through the trials and tribulations of your diagnosis.