Had my annual chat with neuro nurse who made the big mistake of asking whether I felt I’d had support from the hospital - should have warned her to take cover. Made it clear that all my knowledge about the condition has come from Dr Google and you guys on the Forum. So a big plug for the MS community!
(having such a dozy, dopey day today - can’t seem to get going!)
Hi Winker,
welcome to our little gang, hope you get some answers soon,
Nina
Hi & welcome to both Richard and Ken
It’s not 100% certainty on PPMS, so I’m taking Tecfidera but I’ll probably get taken off it in the summer as mobility it still on the slide Still, it was worth a try and steroids have still gotten rid of some issues.
This is a lovely group, I hope you’re both glad you dropped by
Sonia x
Hi Nina, Thank you for the welcome. Ken
Hi Sonia, I am fortunate that I am still working full time at the moment, but had this week off as I was feeling totally worn out , some days are fine others I drag my leg about like I’ve been shot. I keep myself mobile by playing crown green bowls it seems to work for me.
Hi All,
I have had a burning feeling down my left leg and arm as anybody else had this?
Hi Winker,
Yes, I get burning legs if I try to stand for too long…resting usually gets rid of it for me.
Take care,
Nina
Hi Nina,
Its funny you should say that ,it seems opposite to me I have only started getting this since I have been resting this week on my week off.
I am usually on my feet for 8 hours when at work aren’t we a funny lot.
It must be when your minds occupied you don’t think about it.
Dare I ask are you watching the England match today?
Ken
Hi Ken…I’m not watching the football and I don’t think Nina will be either…but plenty of people on here love it!
You could start a new thread about it. Just click on ‘New Thread’, give it a title and write your post…and Bob’s your uncle!
Pat xx
Hi Ken, I was self-employed and carried on working for about 2yrs but the work I did was hard, I worked in financial services and accuracy & speed were essential! I got the boot early last year so I applied to take my personal pension and old occupatiional pension on ill health grounds so I’m now debt free at least I had to give up the gym stuff a couple of weeks before I was diagnosed… I hadn’t twigged about heat but couldn’t lock out one leg after a bath so took a break but never went back
I hope your workplace look after you They’re obliged to make suitable changes for you if needed.
Oops, waffling! Hope to talk more soon
Sonia x
Hello Richard and Ken ,
I’m Michelle and I live in Frodsham near Chester, I am still waiting for an ms diagnosis. I find this group amazing it has helped me so much. I think the biggest thing for me was losing my mobility i’m also affected cognitively too which is quite scary. I’ve been a wheelchair user for 3 years now and it been hard. But since getting my wonderful assistance dog Frazer i’m in a much better place emotionally. We go everywhere together, he’s given me my life back.
Michelle xx
Hi Ken,
Pat knows me so well…she was absolutely correct…I wasn’t watching the football!
Nina x
aHi Sonia,
I hope my employer is more understanding as they Design and build chairs ,beds etc for children with special needs.
Back in 2009 I knew something was not right with me and was working in the steel industry which is very hard and demanding work physically,so I decided to take redundancy and found this job in 2010 oh my I am glad I did as things turned out.
Are you still getting about Sonia?
Has stated previously I play crown green bowls and was playing against a team with this man playing with crutches and he balanced on one crutch with the other under his arm and bowled amazingly well,on the way home my friends told me he to had MS (they did not like to tell me before)and that he said he was not going to let MS beat him good on him.
it must be catching Iam waffling! to speak to you soon ,
Ken x
Hi Michelle,
I am fortunate at the moment is seems to be progressing slowly touch wood may it continue,diagnosis seems to take for ever but we just have to get on with it.
I use to have dogs for many years but don’t have one now but still look after my daughters french bulldog some times, if he had been human hed be a hippy he is that laid back .you can not beat the friendship of a dog they do such funny things at times forget the bad.
it is nice to speak to you,
Kenx
Hi Richard and Ken
welcome to the board…and yes I watched the footy…I love it xx
Pam x
Yes, I had to give up on the stick, crutches or rollator now. My right legs drags badly now BUT fingers crossed, I’m hoping to take part in a spasticity clinical trial very soon. I’ll hopefully hear more in a couple of weeks.
I’m nervous about it as they’ll want he baclofen to stop so it won’t be easy but worth a try
Sonia x
Hi Sonia.
Sorry for the late reply, what does the trial entail? or haven’t they told you yet?
I hope the trial works out for you and some good comes out of it for you. Please keep me posted on how it goes for you.
Ken x
Hi Sonia.
Sorry for the late reply, what does the trial entail? or haven’t they told you yet?
I hope the trial works out for you and some good comes out of it for you. Please keep me posted on how it goes for you.
Ken x
Hi, I applied online and rejected straight off. I now suspect it’s automatic and they go thru the applications and weed out the people they want.
I got a call a couple of weeks later and went thru a telephome screening then it went quiet again, till an email apology came out from the nurse apologising for delay, there was a delay getting space secured at the hospital, I think it might be St Barts but not 100% why I even think that. I believe I’ll be contacted in the next fortnight tho and then go to London hospital for a meet with them and no doubt a load of questions, disclaimers to complete and testing.
When it went quiet I did check the company detail online and they’re actually an overseas company moving into the UK market and have loads of experience with trials.
When I did the STREAMS trial, it was quite incredible. I met with the Doctor after a telephone interview, met at Imperial college and that was for a medical, timed walking and 101 questions. I then went back for the prep. I knew there would be a stemcell harvest, bloods & LP so the big one went on. 4st LP ever, loads of bloods (and decision about which vein would be ‘saved’ for infusions 
and which one they’d use for tests. Lunch in the special participant room (proper TV, sofas & tables and chairs) and then the harvest. Went home and if it’d have proceeded, I’d have gone back twice for infusions & repeat tests (LP, bloods, walking speed & medical). It was a double ‘blind’ trial so one of infusions would be the real deal, the other just a mock one and even the Dr wouldn’t know which. Load of tests 6 months later and then it’d be done. Given that my hair length/volume is such that my husband uses scissors when cleaning the dyson, I was shocked that my stemcells didn’t grow! 
I believe this one will be simpler, an oral med from what I understand, so it’s just a simple case on splitting us, some will get the actual med and some will be on pretend version.
Obviously I really hope I’ll get the real deal as I’m prettt sure the baclofen needs to be stopped first!
I’ll keep you posted on how I find things.
Sonia x
Hi Lynda T,
couldn’t agree more, I was told by a consultant I needed to see a neurologist urgently in January, seven months later…
I bumped into our local MP two weeks ago who was holding a meet and greet outside a local Tesco’s. I asked her to comment on a point.
If she met a man who straight from school joined the army and saw active service, never had a day on benefits served seven years as a volunteer Police Officer then joined up as a regular Police Officer (taking a large pay cut) received three commendations for bravery, and was then told he had a life changing illness but couldn’t be told when he could be seen by a consultant due to a lack of services in the area he lived, all this mans life he had served his country but now needed his countrys help.
She couldn’t answer me
at which point I got of my soap box due to balance issues!!!
Yep Im bloomin annoyed.