Originally Posted by lucy101

Hi there

I really wanted to ask you guy's help before I go back to the neuro this week - as I am in London, UK and on the NHS will have to wait about 9 months for my next appointment... and wanted some advice on whether I should question him about PN.

My story in brief: I was originally diagnosed with MP. I am 36 and one thigh began to go numb at 15, and then the other one when I was about 25. They are both permanently numb now in large patches.

I also have now got a problem in the my left hand: numbness on the back of my hand - and especially ring and little fingers and slight weakness. This comes and goes and I sporadically have problems with numbness and weakness in the right hand too (but less often). The hands and thighs seem linked to some degree with my sleep/sleeping postion: I am often woken up with a completely numb left hand, to the degree where it is disturbing my sleep.

I also have a numb patch on one toe and and the opposite ankle.

Obviously it is not just MP anymore... but MRI's (full spine and brain with contrast) come up clear apart from some scoliosis so MS and tumours have been ruled out. My nerve conduction tests are apparently "better than normal"... but I have reduced reflexes in my ankles. HNPP has also been ruled out. Another neuro found that I couldn't feel vibrations in my feet (when using a tuning fork) very well... but I hadn't noticed this much myself. I am not diabetic and from blood tests I don't have a thyroid or B12 problem.

I have now been moved from the MS neuro to the neuro who specialises in the peripheral nerves... and I really need to be able to question him on what actual condition I could have.

I would be really grateful if any of you could offer some advice as to whether it could be PN (and what if any tests I should be looking/asking for)... or if there are other conditions that my symptoms suggest as I suspect some of you might have been through the diagnosis mill.

I am at my wits end as I am a writer and losing my hand slowly is very upsetting... but not as upsetting as a neuro writing to my GP to discharge me by saying that my "problems will probably resolve" when I have had no resolution to any of my symptoms over 20 years... and things are only getting worse!

Thanks in advance for any guidance you can give me.