Some of you may remember that I came on this board in May, saying that after 6 years of symptoms, I have now been referred to the National Hospital for Neurology in Queens Square, London. Everyone was so helpful and encouraging, even helping me with directions etc.
I just wanted to let you know that I had my first appointment there in November (it was a long waiting list, but worth it). I had a friend with me who is a neurophysiotherapist, which was so helpful as afterwards she interpreted what he had said. Anyway, after hearing my history & doing a physical exam he says that he feels it’s important that I’m investigated, which is great. I’m now waiting for an MRI scan of my spine, + EMG tests & other neurophysiological tests; I understand that will be in the New Year.
The travelling there & back was the worst thing. I got a cab the whole way there as my friend said she didn’t want me to be too worn out for the consultation. It took 1hr 20mins. The return journey we did by cab/train/cab. I was so exhausted I just lay down for the rest of the day (we’d been out 6 hours). It took me 6 days to get over it.
I’m now having to move home because I can’t manage the stairs up to my current flat - I’m on the council’s medical priority list. My walking has really deteriorated so that just 10 mins is all I can do & I’m worn out after that. I can’t get a scooter as, with living up lots of stairs I can’t get it into the flat for charging.
Anyway, I just wanted to say how much I appreciated your help back in May and to let you know where I’m at now. I’ll report back after the tests are done in the New Year. I’ve got an appointment for all the test results etc in May 2014. Things take a long time, but I just hope I get some answers as to the cause of my difficulties at the end of it.
I do come on here and read - you are a great bunch of people. A previous doctor had said it was looking like PPMS, which is why I’ve come to this board. So thanks for your encouragement, and I look forward to being back soon,