Hello, I’m new to this so bear with me. I’ll try and keep it brief. My partner started with the symtoms of MS in Sept 2012, totally out of the blue. She was officially diaganosed around Feb/Mar 2013. Since her first symtoms she has continued on a rapid decline. Throughout her diagnosis I have been waiting and hoping for her to her some sort of remission but it hasn’t happened. She’s had numerous courses of steroids, including very high doses intravencley. She’s had a plasma exchange. She was on avonnex for about a year and she has recently started on Fingolimod. Nothing has stopped her decline. She lost the use of her legs in Sept/Oct 2013 and that hasn’t improved. Other than hospital appointments she hasn’t been out of the house since Sept 2013 as she can’t sit up for long or go on car journey’s due to a terrible pressure and pain in her head. She’s displaying ALL the symtoms of severe MS described on this on this site and has done for a while.
Initially she was diagnosed with relapsing remitting MS but we haven’t seen a remission. The specialist says that she having attack after attack in rapid succession. It’s awful to see how she’s suffering and I want some sort of light at the end of the tunnel. She seems to have got worse since starting the fingolimod. She was only 36 years old when diagnosed and is only 38 now.
I hear a lot about people with MS who only have a few relapses or go long periods between and essentially lead a ‘normal’ life, this has not been the case with my partner.
Has anyone been through a similar situation and more importantly did it improve?
I see you have had no replies and always feel concern when someone no=one does.
Dunno if I can hep, but I`ll try
I know more about PPMS than RRMS, but wonder if your dear wife was diagnosed with the wrong type of MS and hence there has been no let up or benefit from the drugs she has tried.
I read that some folks do suffer with constant attacks and that really does sound miserable.
I am sad to read how little good quality of life your wife is having at the moment.
It might be an idea to post on the everyday living board. You may get more helpful replies, from those who know about fingolimod.
My son has had ms for 14 years he has had no support from any one professional his ms nurse never phones him back when he phone for any advice I am worried he is getting depressed and I don’t know what to say or how to help any one got any advice on how they have managed he has never really spoke to any one but I know he feels angry sometimes even through he never complained I have told him to join a group but he says he just has to get on with it that’s good but I know he is very down any advice a worried mother
I am sorry to learn about the difficulties your partner is experiencing - and you too.
You have described her condition in careful detail in your forum post and communicated what you are both going through. I hope you won’t mind my suggestion here, but I think your GP and consultant should be informed exactly the effects these symptoms are having in your lives in no uncertain terms. Sometimes, when you see a doctor, it can be difficult to express how you feel because you are keen to know what they can do in practical terms - trying this drug or that. It’s important that they know about your struggles. If you do not spell it out, then they assume that you are managing well. (I’d guess that you are ‘managing well’ in the sense of doing everything you can for the best, but that is not the same as not requiring extra resources and help.) I wish you both all the best, and I hope that you can find further help and support.
Because you’ve added your worry about your son to an old thread, it’s sometimes difficult to get relevant responses.
(Hint - you can just start a New Thread making replies more appropriate.)
To some extent, your son has to independently find a way of co-existing with MS the best way for him. You can ask him whether there’s anything you can do to help, but we all have to learn to live with it in our own way. It’s really not good that he doesn’t have a supportive MS nurse.
It is helpful sometimes to rage and express anger at the way MS had intruded into our lives. We don’t have to ‘accept’ it, or be positive about it all the time. I’m still pretty angry at the things it’s taken from me. But sinking into proper depression isn’t useful at all. He could speak to his GP about depression, but I know that’s not an easy thing to do. It’s not as if the NHS are always good at referring people to counsellors, the doctor is more likely to suggest CBT (cognitive behavioural therapy) or antidepressants.
You could suggest he looks for help and advice from this site (the About MS tab at the top), or the MS Trust, their leaflets are excellent. You could even suggest that he joins the forum. Obviously we can only help with our own experience rather than professional advice, but we are pretty good at supporting each other.
Many people don’t like the idea of joining groups, I personally am not keen. But I have good friends and my peers on this site are brilliant at giving help, support and fellow feeling. We even make each other laugh. Certainly a way of avoiding depression.
I hope you are able to gently help your son to find some support from somewhere and that he manages to live without depression.