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support wanted

Hi. This is the first time I have ever used a forum so please bear with me. My husband was diagnosed with relapse and remit 18 months ago. I thought this meant periods of fairly good health interspersed with relapses. Unfortunately his doesn’t seem to have worked out like this. He seems to be on a constant gradual decline with foot drop and weaknesses in his arms. He also has chronic fatigue. I am really struggling with how to deal with all this. The worries of what the future will hold occupy all my thoughts. I have 2 15year olds with all that entails and really need to be able to talk to someone who understands. There is not a group local to me and wonder if anyone can make any suggestions. Many thanks

Hi, sorry I can’t offer any advice except to say try reposting this on the Everyday Life forum you might get a quicker response. Good luck Jan

Hiya, I have recently been diagnosed with RRMS, i have an 18 year old and a 15 year old and am struggling to run a household and hold down a full time job. Really struggling at the moment as i have only just returned to work after 10 months off recovering from a shoulder op. My MS was diagnosed just as i was about to return to work. Fatigue is one of my biggest problems at the moment. I have been advised to rest when i get home from work, try to exercise, watch my diet and take daily doses of vitamin D.

My symptoms have been gradually easing off although some seem to be hanging around. My husband has been brilliant and makes sure i dont over do it at home and likewise at work my employer has been brilliant and the team of girls i work with have been really understanding. I would say so long as you dont do more than your body is telling you to do you should just about get by. I’m hoping to be prescribed a new drug Tecfidera within the next couple of months. Have you been told about this? It’s supposed to recuce your chances of a relapse by 50%.

I have also been told medication is available for chronic fatigue, which i am also hoping to try. Do you have a MS therapy centre near you, these are also supposed to good, although i haven’t yet tried mine. They offer oxygen treatment for fatigue and physio for balance problems as well as many other treatments.

Hope this has been of some help to you, please send me a private message if you would like more advice or a chat about anything. Being newly diagnosed i have found talking to people about how im feeling a great help!!!

Max

Hi, I am wondering if your hubby`s RRMS has now turned into SPMS. This often happens sadly. But even with RRMS, remissions can be less and leave disabling effects after attacks have gone.

Has hubby got an MS nurse, or has he a neuro appt coming up? I think it is sensible to ask the question about which type he has, plus is there any suitable medication which might help.

pollx

Hello, I am trying to find out if there is respite care available or care available for say 2 hours a week. My sister-in-law has advanced MS and her husband is struggling to cope emotionally and physically. I am enquiring on his behalf to see if there is any help available and who I should contact. Thank you in advance of anyone’s help.

Hi Samola,

My mum needs a lot of care due to her ms, my dad does most of it with a bit of help from myself. We have an agency called Crossroads, which provide a lady who comes in one afternoon a week and sits with mum to give dad a break, some time to himself. She’d take mum out if she was more mobile but it’s just not possible with mum but I know she had other people she takes out. We’re in Scotland, not sure where you are or if you have any similar organisations. I think it’d either be mum’s occupational therapist or her social worker that arranged it. Your sister in law’s husband could ask his gp where to get help, or is there a carers centre he could get advice from. Citizen advice might be able to point him in the right direction. But there should be somewhere that will provide a carer to give him some time off.

Good luck to you all x

Hello LucyAnnie. Thank you so much for taking the time to reply.

We we do have a Crossroads here in Gloucester which has a day centre I have since found out so I am looking into that. I just hope it doesn’t cost too much as my brother in law is a full time career and funds are dwindling.

Thank you again for your time and so pleased for your dad receiving support with your mum.

best wishes to you all x