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Old 08-12-2008, 11:18 AM #1
lucy101 lucy101 is offline
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Join Date: Mar 2008
Posts: 12
15 yr Member
lucy101 lucy101 is offline
Junior Member
 
Join Date: Mar 2008
Posts: 12
15 yr Member
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Hi Sunnyday - I am sorry you are having such a miserable time of it... but glad you found this place and all the great advice here.

I just wanted to say that I am in the UK too and it does seem to be very difficult here getting help/answers to anything. I, like you, seem to have many of the symptoms of MS... but I also have clear MRI although I haven't been offered an LP (and don't really want one).

My symptoms have been slowly progressive over a 22 year period now but I am quite certain (after studying myself) that there is a demyelinating disorder of some kind. Like Dahlek, I am also now of the opinion that the criteria and differentiation between MS and some demyelinating disorders is unhelpful.

I have also had all the same tests as you (and had apparently normal EMG's of my legs and arms) and seen around 7 or 8 neuros now, including PN and MS specialists at the National Hospital of Neurology... and I get a 'don't know' and 'we aren't sure' and then 'we will see you in 18 months' to see how much worse it is.

It has helped me to get hold of all my medical records (you are allowed to do this - the cost is nominal) from the GP and now waiting for the hospital ones so that I can use some of LizaJane's charts. It was really interesting seeing the difference between what doctors told me and my GP e.g. they never told me that 20 years ago I had a pale optic disc and that they were taking a 'wait and see' approach to it being MS... meanwhile I thought I was going mad!

I may go privately if I can find a good neuro because I am quite sure that on the NHS they are not helpful unless you immediately fit into a category... and of course you only get a few minutes with them and no time for proper questions etc.

Meanwhile, I am treating myself as though it is MS/some kind of PN and doing my best to exercise and live a healthy lifestyle (modified Swank/Best Bet, lots of Omega 3, B12, other things.... just in case they help).

One thing that has happened is that the very last symptom: an arm and hand this time has actually got better... which hasn't happened before... and also directly coincides with 18 months of my regime so who knows... maybe there has been some reparation....

Best of luck
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