Hi there - and forgive me if I shouldn't reply to you all at once - still working my way around your excellent board!

First of all thank you all so much replying - I thought some expert patients would be the best people to approach... and you are!

Hi Melody L - I haven't had a spinal tap.. but think I shall ask for one. I thought they would give me one to finally dismiss MS but they didn't want to!

I do have pain - not all the time and different in different places e.g. stabbing pains in the ends of my left hand fingers (the problem hand) and in the left big toe (really quite painful)... but actually haven't had these for a while. I also have a tight band kind of pain just below my left knee. The pain in my thighs is a stabbing pain just above the knee (at the edge of the numb patches). I also have had buzzing in toes and thighs. Pain in my thighs was actually much worse about 15-18 years ago when my right thigh got dramatically worse over the course of night and then over the next year: stabbing, buzzing, burning, some spasms (restless leg?), bubbling sensations. It then settled down into a slower pattern. The pain in my left hand and arm is more of an ache (I feel like I want to hold it or put it in a sling). It also feels sensitive and painful if I squeeze it if you see what I mean.

MrsD - I will try and get my hands on my B12 results over the next few days. I note from reading one of the links that it can show as pale optics... and I just paid to get hold of all my medical records for my whole life... and at my second neuro at 18 (when the leg became markedly worse) she notes that one eye had a pale optic nerve... but felt no need to pursue that or tell me that she suspected MS! The later neuro who diagnosed MP also noted that it was very rare in someone so young. I don't remember wearing tight clothes much. I have had no surgery... although lots of falls from my horse as a teenager... My scoliosis is at the top though near my neck.

Dahlek - the links are absolutely fabulous... so clearly laid out that I can definitely get my head around them before I see the doc. I did actually have a bad case of pneuomonia at the age of 9/10... my first numb thigh patch slowed up a few years after that... well that is when I first noticed it but it could have started from that point but been very subtle I suppose (progression was very slow at the beginning). I have had lots of flu and penumonia jabs too as I developed asthma from the pneumonia... although after doing all my MS research I declined to have them last year and won't have them again I think.

You are spot on with the fear actually - after living in abject terror with all of this for so long... last summer something snapped and I thought that's it I'm sorting this out now... the fear level definitely went down and as long as I am moving forward and learning about all of these things I feel so much better.

Shiney Sue - I do hope things get better for you - it is so frustrating.

Again - thank you all for your input - I feel like a door has opened up in my brain if you see what I mean!

Best wishes to you all!