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When all my tests came back clear I started to worry people would think I was mad and just imagining it. Thankfully my neurologist kept telling me that though the tests were clear there was obviously something wrong.

Blood sugar has not been checked. It was last checked when I started university about 8 years ago. I find it hard with the neurologist and doctors as the neurologist says its PLS but doesn't really go any further than that and my GP doesn't have a clue about neurology and says it's up to the...

I can feel but there is a huge loss of sensation. It also seems a bit delayed sometimes. Like I will stand on something with bare feet and there is a second delay and then I feel it. However then I often trip because my foot will catch on something but I won't feel it catch. It is hard to...

Sorry I have been battling with my employer over what is going to happen to me job wise. Yes the numbness is always there. It started off hardly noticeable and slowly got worse where it is always there. In my fingertips it is when I have been using my hands or arms a lot or maybe that is the...

Thank you. You are the first person who seems to have developed it before 40 apart from me. I am very tall. I think the numbness is lack of circulation and I am 6ft 1 so like you said that it could be. I find it hard to get around as my balance is so bad and I tumble over a lot. I am hoping to...

Yes they did a nerve conduction as well and that came up clear. My neurologist has ruled out everything else and is pretty sure it is PLS. Its been quite strange I seemed to have gone down hill quickly in 12 months and now everything has ground to a halt symptom wise. My balance and walking is...

I am in the same position as you. I was really scared at first and thought my life was over but you just adapt and get on with life. I started a blog to get things down as I found if you write things down they don't always seem so bad. Or just talking to people. The main thing is to try and stay...

Hello. I have just found this forum so thought would introduce myself. I am 33 and about 16 months ago started to get pain in my knee after maybe 20mins of walking which gradually got worse until I could walk for maybe 5 mins before the pain started. My doctor thought it was fall out from...