Husband has MS (multiple sclerosis, not morning sickness!), anyone in the same boat?

[Froggy81]

Hi,

I just wanted to talk to other people who have a DH/DP with MS. My DH was diagnosed last year and his symptoms seem to have worsened in the past few weeks. He now has quite a bit of trouble walking and his balance is all over the place. I am 37 weeks pregnant and am really anxious about how we will cope once the baby's here. I have urged him to go to the doc but he has lost faith in the medical profession as he finds them ineffective (my shared opinion in a way, as they failed to diagnose his MS years ago) and refuses to see the consultant.

He is trying very hard to get better by doing regular exercises, seeing a physio, change in diet, etc. It breaks my heart to see him fighting so hard and getting worse. I feel really powerless and don't know what to do, apart from providing emotional support as best as I can.

How have others coped with the disease and family commitments?

[RedRosie]

Poor you. I am in a similar position although my DH who is probably somewhat older than yours has cancer - advanced lymphoma which is a slow growing treatable but not curable kind of condition. I also find it heartbreaking that he tries so hard to keep fit and worries so much about his health.

At the moment though, you need to remember yourself and the baby. You will manage, and your new DC may give your DH huge incentives to be as well as he can be and to accept all the help and treatment available. People with MS can have long periods of remission and these are the times to make the most of every single thing that you have.

[RedRosie]

Bumping for you. Probably swamped in a tide of AIBU.

[TiaMariaMum]

Do look at the Multiple Sclerosis Resource Centre. They are a small MS charity and publish a magazine, New Pathways. It is very upbeat, concentrating on lifestyle/diet changes and very hot on new research and treatments, including lots of alternative treatments

[NunTheWiser]

Congratulations on the baby!
My mum has MS and she gets a lot of external support which makes life a lot easier. Mum now has a social worker, which took a bit of getting used to. I think she thought that a social worker was for people who were "failing or vulnerable" and not "someone like her" IYSWIM. This woman has been wonderful, giving her great advice on what help she is entitled to, making sure that they have the best resources for daily living, co-ordinating assistance etc. It makes a profound difference to her quality of life.
Dad is amazing and looks after Mum really well, however, all his time is taken up by being a carer. Getting a social worker onside, as well as taking all the help offered by their wonderful local branch of the MS Society and finding a great GP that she trusts and can work with, means that there are other people helping look out for the bigger picture and making sure that both Mum and Dad have what they need to live life to the fullest.
In one of these weird, random twists of fate, my MIL also has MS. She refuses to engage with any support agencies or have anyone round to the house to help, insisting that FIL does everything. He just can't manage and has become very unwell himself as a result.
I don't want to scare you, not when you are waiting for the most wonderful new arrival!! I do think that your DH does need to be very realistic about the support he is going to need over the years which you are simply not going to be able to provide on your own, especially with a young family. Keeping himself fit and healthy and maintaining a positive outlook is crucial, however the reality is that this condition will impact on his daily life and will progress. He does need to find a GP or specialist that he can build a working relationship with because he will need one. For both of you, having people on your side who know what you need and will help you fight to get it, will be invaluable.
I hope this doesn't come across as being negative. I worry that sometimes being realistic doesn't sound very optimistic, which I don't mean it to be at all. Good luck to you all.

[giagindi]

Hi, just marking my spot; will return! My 40yo DH has Parkinsons disease, so not the same but still neurodegenerative. We have a one yo DD. will be back later to tell you some of our experiences with a newborn and stuff generally...

[7to25]

Hi,
My younger sister has MS. I think that your DH will have to, eventually, have some contact with medical provision and probably the sooner the better. His anger has been directed at the medical profession but as his MS progresses he will need imput from doctors, specialist nurses and social services. Is he too frightened to admit this to himself?
You will have to refute his ideas of not seeing the consultant as this cannot do him an good in the long term. Good luck with the forthcoming birth and with your future together. You do have one, but not perhaps as you both imagined it. You will have to grieve for that imagined future and learn to live a different life.

[squeakytoy]

I would say he really does need to see a doctor. This is not something he, or you, can deal with without the help of experts. It must have been very upsetting that it was mis-diagnosed initially, but that is not going to make it go away unfortunately. Medical help can slow down the progression of MS. Please try to persuade him to go to his GP and see what resources and medication are available.

He owes this to you and the baby as well as himself. He wont be able to keep this in control on his own, but with correct treatment, I do know it can often be slowed down considerably.