New here and struggling

Was diagnosed in 2005 and it was hard but managed. Noticed the last few weeks have been a lot weaker not able to stand and thinking is effected. Know this is another attack and not liking options with a neurologist. Tried steroids in the past and reacted badly, never again. Do not need an MRI to tell the Dr. what I am feeling. Think the Copaxone is still working. After being diagnosed was in a wheelchair within a few weeks. Been with a walker for the past few years. I have zero family support and managed on my own. Now with these changes, emotionally it is very hard to deal with. Talk to a close friend but they really do not know how difficult life is right now. Any advise would be greatly appreciated.

Hello Lilly, welcome to our forum . My thinking is also affected I find it hard to process things and to multitask my cognitive abilities have badly been affected . I’m no longer allowed to drive . I suffer weakness too and use a wheelchair and have Frazer my assistance dog to help me. I’m not diagnosed yet it was thought that this was functional . I’d like a respectable diagnosis but I’ve stopped allowing it to get to me , it is what it is and I just get on with it as best as I can. Michelle and Frazer xx

Hi Lily

I can’t imagine how hard it must be without the support of family. My family and friends are lovely and they’ve scraped me up off the floor, both physically and emotionally and I love them to bits. Even with all their support it can be a lonely illness to cope with as you mentioned.

There are helpful finds on the internet to describe some symptoms e.g. the spoon theory is great for fatigue and some of the posts on the form are great, but no matter how close friends and family are, they don’t live with the day to day difficulties we deal with.

All I can say is that you’ve made a good decision coming to the forum. The fantastic people here saved me and I’ll always be grateful to them. Do you have a supportive medical team? They may be able to help with your symptoms and help you find gadgets or new ways to do things. Don’t forget that they see many people who struggle and get shown unique ways we do things.

I wish you well.

Cath x

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Hi Lilly

If you feel that this is a relapse, you should let your neurologist / MS nurse know. If you have it recorded, then it’s possible later on to change your DMD if the Copaxone isn’t working for you anymore.

The way I’ve tended to contact my neurologist between appointments is by emailing his secretary.

You might find more answers to your questions on the Everyday Living board as this one is generally for people with Primary Progressive MS. This means they have less experience with disease modifying drugs and relapses generally.

Welcome to the forum, hopefully you’ll find plenty of people here who can empathise with you, answer questions or let you know their thoughts and help as much as we can. Equally, your views will be helpful to others.


Thank you Sue I do have Primary Progressive M.S do not have days when things resolve. Just meant was able to handle the stage was at and now it has gotten much worse and now will have to accept a more broken body and emotionally this is very diffucult. No there is no medicine for PPMS. Appreciate your advice.

Hi lily welcome, ive got plenty of family and friends but nobody understands unless they have ms so thats why this forum is good.There is usually someone with good advise or just a sympathetic ear who knows what you are going through .Im in a wheel now i started dragging my right leg 13 yr ago and got dx approx 10yrs ago i try and be a cup half full person but sometimes its hard .Try and take one day at a time and keep in youch via the forum,i dont go on much but i read comments daily theres always good advice.Take care Jo xx

Sorry Lily, I was confused because you said that you were taking copaxone which is licensed only for relapsing remitting MS. I suppose you were prescribed it before the doctors decided you were in fact progressive.


Hi Lily

Welcome to our lovely forum, lots of lovely people here, always willing to listen, and offer advice when they can. Take one day at a time and be kind to yourself.

Look forward to seeing you here in the future.

Pam x