Hi again everyone :-)

Hi Everyone

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,

B x

Good luck with the tests and the move when it happens B, Please come back and let us all know how it goes. Nina x

Good luck with your tests and your move B. Mobility problems and fatigue I think, are the most infuriating symptoms of this illness but I’m glad you’re trying to adjust sensibly, looking at moving and getting a mobility scooter. I think you were very wise taking someone with you who could understand all the medical “speak”. I was a nurse (and although the ms seems to have muddled my brain a lot) I understand what’s being explained. My dad came with me to all my appointments as we’re very close, and he understands very little of the jargon but remembers what was said so between us in the car on the way home we both got the full picture. We’d both asked questions during the examination but I can’t remember much. Then we’d sit and discuss how much we’d mention to my mum and daughter so that they were put in the picture but didn’t need information that would worry or upset them. It works very well for us.

Anyway, take care, have a restful Christmas if possible and good luck, keep in touch, you can come back regularly with comments and questions, you don’t have to wait until you have a definite diagnosis, the fact that they suspect ppms tells us you have the same limitations and you might have useful tips for us too.

Cath xx

Hi and welcome back.

6 years is a long time. Have you had any scans or other tests done before. Have they sent you to Queens Square because they couldnt confirm your DX before. I have been in limbo too for a long time - since 2005 but walking only became issue at the start of 2011.

Moyna xxx

Best of luck B. Only those of us who know what it’s like are able to say we hope you DO get a diagnosis as we know what hell it is to have the symptoms but no answers. Good luck with the housing. If things go on for too long without an offer, go and see your MP. I used to work in social housing and a letter from your MP can work wonders. Come back and let us know how you get on. Pat x

Hi Everyone

Many thanks for your lovely answers and welcome.

Moyna - yes, I’d had a lumbar puncture in 2009 + brain scan, but they were clear then. I’ve been on Pregabalin for 4 years now because of the neuropathic pain in my legs, + pins & needles in my feet. Things have progressed so much since then with numbness in lower left leg, + leg stiffness which has affected my walking and I had to take early retirement from work as I couldn’t manage the travelling by bus/walking or deal with the fatigue. I now use a stick outside all the time. The progression is what prompted the referral to Queens Sq, which I’m very grateful for.

Pat - I quite agree that being in limbo is the worst thing - it’s so hard to come to terms with things when I don’t know what’s causing it.

I now have an appointment for the spinal MRI (apparently it’s a special MRI scanner?) on 16 Jan, so not too far away.

I’ve also had an offer to view a ground floor flat near to me, which is great - next Friday. Maybe things are looking up, what with that and the Queens Sq appointment.

Will keep you informed and thanks so much again for your encouragement. You all take care - you are all so great.

B x