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DS has recently been diagnosed with MS

(10 Posts)
anxiousgran Fri 30-Jan-15 14:01:47

Thanks for so much reassurance and positivity. Gillybob, I'm so pleased you have kept so well, and I will keep your experience in mind.
It's true he has the "best' kind, and that we should just carry on as normal, look forward to the wedding, and hopefully new baby soon.
Thanks Elegran for practical advice. I feel sanguine again today after reading everyone's replies.
Hopefully I will be able to report a new baby soon.

gillybob Fri 30-Jan-15 09:07:02

anxiousgran I was diagnosed with MS at 29-30 (I'm 53 now) I have the same type as your son and can honestly say I live a "normal" life (whatever normal is) most people would never know. I do get very tired but there again I have a stressful life so that is partially my own fault. I sometimes struggle for words (which can be a bit embarrassing when the word is there but won't come out) and a few other minor symptoms but unless I told you directly you would never know. Please try not to worry too much and take no notice of the scare mangers. I have heard it all. As Elegran said your son has the "best type", as do I, where he may have the odd "attack" but on the whole he will lead a normal, happy life.

I am at work so must get on. I will try and pop back later. Best wishes for the future wedding. smile

Mishap Thu 29-Jan-15 22:45:51

I am so pleased that your son and his partner have a wedding to look forward to and that they are making plans for the future and more children. Your DIL-to-be sounds a good person and obviously loves your son very much. You have not asked her how she feels - and that is the right thing I am sure - but her feelings are demonstrated by her actions. She loves your son, she is planning to marry him and she will be there at his side as they face this challenge together. That does not mean she will have a miserable life.

My OH has PD and he is slowly deteriorating, but, my recent ill health notwithstanding, we lead a happy life. He receives the best of medical treatment and the worst of his symptoms are kept at bay. I do not have a miserable life because I live with a man with a degenerative disorder, because he is still himself even though limitations in his capabilities are increasing.

It sounds as though your son has confidence in his doctors and I am sure that they will work to keep the disease at bay as much as possible and concentrate on keeping his quality of life as good as can be.

Please don't be gripped with fear. During my working life I was with many people with acquired disabilities of one sort and degree or another and their quality of life was good; even if there are times when your son is less well than you all might wish, this does not mean that his quality of life will be unsatisfactory. He will have people who love him and respect who he is around him. You will all face this together and be stronger for it.

When my OH was diagnosed, my heart sank as I had worked in hospitals in the bad old days when there was no treatment and I was basing my feelings on that. It is the same with MS - things have changed a lot and supportive treatment is available that was not many years ago.

The MS Society has lots of advice for relatives and a forum where I am prepared to bet there are threads from people in very similar situations to yours.

I hope the wedding is fun for all; and that another GC appears at some point.

janeainsworth Thu 29-Jan-15 22:24:13

anxiousgran I can understand how worried you must feel.
I know very little about MS, but one of my best friends was diagnosed in 1991. She had a course of intensive steroid therapy and apart from having to be careful not to get overtired, and occasional eye symptoms, has been fit and well. She's retired now and does lots of travelling and enjoys life to the full.
I hope it works out similarly well for your son.

MargaretX Thu 29-Jan-15 19:29:32

I'm no expert but know of 3 people with MS, two are members of our Bridge Club and over 50. For instance you can meet people and play Bridge with MS and from a wheelchair, and many learn it for this reason.
There are always different drugs coming on the market and maybe there will be break through soon. The third one is a daughter of a friend. As graduate she was going into the Civil service and failed a health check.
She landed in hospital and from her hospital bed applied to be a computer programmer which she now is, and likes it and has a sitting down job.

None of these three people is unhappy or miserable or leads an unfulfilled life.They have had many years to get used to the idea. Your son will cope. I'm sure of it

KatyK Thu 29-Jan-15 18:40:52

It must be very worrying for you. I don't know anything about MS but for five years before I retired, I worked with a lady who had it (she was in her 30s, was married and had a daughter). From the day I began to work with her until the day I left she didn't look/seem any different. I saw her again recently, five years after I had left and she looked really well. She actually looked better than I have ever seen her, having lost weight. Like I said, I know nothing about it and wouldn't venture to give an opinion but what I have said may make you feel a bit easier.

Elegran Thu 29-Jan-15 18:30:42

Perhaps the lady's partner had one of the more debilitating varieties. It is a very variable disease, no two people get the same symptoms or progress. Your daughter and her husband can only deal with what they are sent. She is lucky to have you for support.

Elegran Thu 29-Jan-15 18:27:50

Yes, it can be possible to have a good life when you have MS. He has the "best" kind there is, with intervals (we hope long ones) between attacks and not a consistent deterioration. I used to be a volunteer at a Multiple Sclerosis Therapy Centre, and there were a lot of people attending who had been diagnosed years ago and were still relatively OK.

The husband of a very good friend has MS, the gradually worsening type,. He was diagnosed way back in 1980 or so, and continued to work for many years. He is now confined to a wheelchair, and has carers coming in to help him get up and dressed and to go to bed, but he is still at home.

For support outside the immediate medical teram, look for your nearest MS Therapy Centre at www.msntc.org.uk/ and phone them. They are happy to talk to relatives and reassure them, and tell them what facilities are available at that Centre. specialised physiotherapy is one very useful service.

The Centres have no formal connection with the MS Society. They were set up in the 1980s by a neurologist in Dundee, at a time when very little was known about MS. He was an enthusiast for oxygen treatment, so most of the Centres provide that, but they also do physiotherapy, informative talks and alternative therapies like acupuncture and so on - but their chief value is in meeting other people having the same experiences, and swapping stories about what is helping symptoms.

Tegan Thu 29-Jan-15 18:27:16

Perhaps they're actually relieved to now have a definate diagnosis. I'd try to ignore your friends remark [easier said than done, I know].

anxiousgran Thu 29-Jan-15 17:56:52

My DS was diagnosed with MS in October after 3 years of different diagnoses. Before his diagnosis his symptoms were put down to residual damage from an attack of transverse myelitis 3 years ago.
He is 31, my DIL to be is 30 and their daughter is 20 months. They are busily planning their wedding in May.
When the diagnosis was made, I wondered how, apart from the upset, concern and worry, did my DIL feel specifically about marrying someone with MS. I didn't ask her.
Their plans have carried on as normal, and they have put the MS thing on the back-burner for now. They have had great care form the neurology team and DS feels well. He has been offered the most recently available drug on the NHS, but they have decided to hang on before starting it, as they are trying for another baby.
Something has disturbed me today. I was out with friends, and one said how miserable her sister is. Someone else commented "No wonder she's miserable, she has a miserable life, since her DH is ill with MS".
There was actually another reason for this woman's misery, but that was all I heard. I am gripped with fear for my DS, my DIL and grand daughter, whereas before I was pretty sanguine.
He has relapsing/remitting MS. Things may not deteriorate much.
can someone please reassure me that a happy life is possible when a partner has MS?