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Just joined

Hi everyone, I joined yesterday so i’m just saying hi. I was diagnosed with P P MS in 2007 after a mri scan and lumber puncher. I first realized something was not quite right about 15 years ago when i found i couldn’t wiggle my toes on my right foot as well as i could on my left. I finally went to the doctor in 2007 when i was walking with a limp all the time.

At present i’ve lost the use of my right hand and arm and my right leg is very bad. Funny thing is it only affects my right hand side, my left side is fine.

I’ve been watching this site for years but finally decided to join after getting the dreaded letter from the DWP about being transferred from IB to ESA. I’ve joined benefits and work and I’ve got my MS nurse coming round to help me but it still looks very frightening. I think over the next few mouths i’m going to need all the support i can get.

Tim

Hello Tim.

We could be a mirror image as my left side is totally useless. I’ve just retired through ill health and am just about to embark on applying for benefits. Post your outcomes on this or the Everyday Living section as there is always some excellent advice available.

Good wishes.

Hello Tim, I too read posts on this site for ages and ages before I actually posted a note, however, it’s the best place ever for support…always find its such a big help just to read posts that clearly are written by folk that have the same problems as me. Some of the members are so very wise…Pat ( snow leopard ) springs to mind. Never ceases to amaze me that our governments make it so complicated to apply for the various benefits…I am sure they could save a fortune by simplifying the whole system instead of complicating it…think they all must come from another planet!! Good luck, Best wishes

Thanks for the welcome posts. Good luck Steve with applying for your benefits. So far i’ve had my letter and phone call from DWP and i’m waiting for the questionaire. I’ve acturally filled in the online one which is a great help. I’ve done a bit of reseach on line and i’m in a state of shock about this ESA. I just can’t believe the Government have come up with this cruel and mean benefit and imposed it on us. Anyway i’ll keep you posted. Got my MS nurse coming round next week for some help with it.

Tim

Hi Tim and welcome…

I was dx in 2008 and like you had symptoms for years… small stuff at first and then the fatigue got really bad. I’m still able to walk about my flat and can manage short walk outdoors on good days (very short actually!)… I use mobility scooter for local area and am in process of getting wheelchair.

I’m still on IB and am dreading getting my ‘call up’ forms… but you sound as if you’ve got it under control. I have noticed that more and more people with MS are getting put into support group without having to appeal… and sometimes without the medical. So best of luck with it… I’m sure you’ll be fine.

Very glad to have you in the gang… we are a small but perfectly formed group!

See you again soon,

Pat x

Thanks Pat, we seem to be in very simular situation. I’ve got a wheel chair coming from the NHS, push type as i can’t self propel, and i use a mobility scooter , which is a god send. My walking got to the point where i can just about manage to get to my car. I only go to places where i can park right outside.

I’m hoping too to get into the support group with out too much trouble, i’ll be very pleased if i do. But i’m preparing for a battle just in case. When you get your “call up” letter, if you need any advice just let me know.

Tim

hi tim,

I was also dx in 2007 & also had problems for a number of years prior to this. My weakness is on the left side & I now need a wheelchair.

I’m now getting ESA support group , after appealing it with them. I’m dreading DLA going to PIP because of having to go for regular checks, I don’t go out that much. Why can they just not see you once if necessary, unless they think you could improve.

Make sure you tell them all the problems/issues your having.

Hope it goes well for you…

john

Hi Tim. It’s the right side for me too., so story of my life - I’m never right.

Pop in for a chat whenever and “it’s good to talk”.

Thanks guys for the welcome. I’m dreading PIP as well. Hopefully that battle shouldn’t be until 2015 for me i think. Glad to hear you made it into the support group John.

Pleased to meet another right sided Mr Grumpy, I’m never right either .

Tim

Hi Tim, Just wanted to welcome you to the site. I am affected on both sides by my MS but my left side is worse than my right. Fatigue has got increasingly worse recently too. I am using crutches to walk but sometimes need to borrow a w/c when I go shopping. This is a great place to get info or to chat with like-minded people. Feel free to rant and rave at us, if you are having a bad day too. Teresa xx

Welcome Tim, it’s not a group you want to be part of BUT we are the best andgang. 2007 was quite a year for the PPMSers. Take care, be safeM

Hi Tim and welcome

I am slightly unusual in that my diagnosis came straight in with SPMS so I’ve always been a person with progressive MS even if I’m not strictly a PPMSer.

My main issue is mainly mobility, left side, so I have that in common with PPMS too.

Good Luck with ESA, I am sure that there will be someone on here who can help. Fortunately I am now retired so I’m not affected by that malarkey.

Anne

Thanks for the welcome everyone.

Tim

Just wanted to say hi and welcome to “our gang” Tim

PAM X