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DH diagnosed with MS today

(72 Posts)

DH is 29 and we have just celebrated our first wedding anniversary. We have a DD who is 13 weeks old. He had been having odd symptoms including pins and needles and speech difficulties. Luckily he had bupa cover so we got in to see a specialist and had tests really quick. A fortnight ago it was all fine. Today he was told he had relapsing remitting MS. We have been reading up but have no idea how this will affect our everyday life. Any advice?

weird2014 Tue 20-May-14 20:16:48

Sorry about your DH. I have also recently been diagnosed with RRMS after similar symptoms to those you describe. I am still getting my head round it, its a very strange and unpredictable disease. I have found the MS Nurse to be a real help so if you can get access to one asap I would do.

Your DH might be eligible for disease modifying treatment and, if so, there is a bit of a mind boggling array of treatments, all of which are taken differently and come with different side effects. That said, I have recently started copaxone, that's a once a day injection and not had any problems so far other than it stinging.

Your DH will need to take time to get to know his symptoms and what makes them worse. This will be hard on you too as it is difficult to understand it and most symptoms are invisible. I have felt really up and down so he is likely to feel emotional about it.

If he is working he needs to think about what he tells his employer, that will, of course, depend on his relationship with them.

They told me not to Google, but of course I did. I actually found it helpful to research but there are so many different experiences of this so its impossible to draw conclusions about how your DH's MS will manifest itself.

There are good MS sites, MS Trust is good and Shift MS aimed at younger people.

Take all the support you can, especially with a tiny baby, I am learning to swallow my pride and realise that people really want to help - but its an adjustment and hard.

PM me if I can be of any help but I hope that's helped a bit.

Thank you so much for taking the time to reply to me. We are on the list for an appt at an MS clinic where hopefully we will get a bit more information. The consultant wasnt the best, bupa or not!!

He seems to have decided that it will barely impact him. That he will suffer pins and needles every couple of years and thats it. It seems to be his way of coping at the moment though. He has burst into tears a couple of times when he has dropped something or misheard me. Hes blaming it all on his illness.

His employer is really good thankfully so thats one less thing to worry about. I might PM you at some point if thats ok. Im sorry youre going through it too. It sucks. thanks

weird2014 Wed 21-May-14 13:59:59

No problem at all. Both of you take care.

redastra Wed 21-May-14 16:19:56

Hi Piffy!

I am really sorry about your husband, the MS society are really good. And when you go to the MS clinic you should meet and be given details of a MS nurse specialist. They are normally a fantastic resource and a good sounding board for problems/advice. Can I ask where you are? I might be able to give you some info on resources etc that are close to you!

Im in the north east red. I have tried reading stuff online but its just so overwhelming. Ive sent him out for a drink with a friend so im just at home with DD trying to get my head straight. Weve had a really rough few years and the last three months with DD have been the most peaceful and happy we have ever had. We ve had a great year with our wedding and the pregnancy and have been so happy. I dont think its sunk in yet. Sorry if im rambling!!

WolfMoon Wed 21-May-14 18:10:50

I frequently work with patients with MS, and so many of them have a disease progression that has barely affected their lives. Unfortunately, nobody can predict how the disease will progress. Obviously there is a range in how serious the disease becomes, but for one lady who was diagnosed nearly twenty years ago, your DH's idea of what it will be like is her reality - she has pins and needles and a bit of speech difficulty about every eighteen months or so, and that's all she's had. There are some utterly phenomenal MS services within the North East, and I'm sure you will receive amazing care.

Congratulations on your wedding and the birth of your daughter, by the way.

Thank you wolf. We had a lovely wedding and DD is a joy. I volunteer for riding for the disabled so have contact with a variety of people but have next to no experience of MS so it helps to hear from people who have that experience. I guess we will just have to wait and see. We will still have a good life. Maybe just not quite the one we planned. Plans are overrated smile

He went back to work today after a few days off. He only lasted a few hours. He says hes aching but hes so down. Iv never seen him so subdued. Im so worried for him. Just getting it off my chest. Im sat here with DD.

Weve had some truly awful luck in the last few years. I thought it was getting better but i think we must have used up all our good luck on DD. We are so lucky. Shes a happy healthy little thing. After previous losses ive been so grateful to have her in my arms.

weird2014 Sat 24-May-14 09:42:01

It's early days yet piffy so try not to worry too much. I have found MS can mess with your head as much as your body. Pre diagnosis, when I had no idea MS was the cause, I felt really down and anxious, my nurse told me it can have this effect. For me it's the worst symptom, the pins and needles and pains and weird physical things I can deal with but the low mood is horrible as it hits at life's pleasures.

However it does pass and things will get better but it takes time. The diagnosis is bound to have an impact on him. Is there people he can talk too? I find this helps and I have been relying on the support of brilliant family and friends. Some are fab at listening to me whinge (my definition not theirs), others great at practical support and others just at distracting me and getting me to think about something else. Some amazing people are all 3!

Your DD sounds gorgeous. If your DH needs some time at home try and value this as precious family time, she will be changing and developing every day, maybe she can provide an alternative focus for your DH. My children are older but having them has really helped, it's a constant reminder that there is more to life than MS.

Keep going, these emotions are totally normal.

WolfMoon Sat 24-May-14 12:21:20

Sorry to hear your DH is so down. Next time he's in the hospital or GP, ask them to check his Vitamin D levels. It may well just be a natural reaction to receiving his diagnosis, but Vit D levels are commonly very low in MS patients and this can affect mood.

Thank you both for answering. I just felt so alone.and worried last night. I needed to get it out.

He is taking all of next week off so im trying to plan nice places to go. I sent him out with his friends the other day. His close friends have been brilliant.

The consultant advised vitamin d and exercise but i didnt realise the lack of vit d could cause low mood so i will sort this out.

DD is the only thing that is making him happy at the moment. Im so pleased she is here. He never normally gets affected by stuff. Im the worrier. I think the way he feels has even taken him by surprise. Hopefully this week off will help.

Moid1 Sat 24-May-14 15:58:12

Hi, I have PPMS, diagnosed last July.

Everyone's MS is different, but very strong anecdotal evidence that lifestyle is very important. A good diet with lots of veg etc.., oily fish or fish oils, gentle exercise, vitamin D and try and reduce stress. Personally I do yoga, high dosage vit D tablets every day and limit saturated fats.

Lots to think about. Scary things on the web but also positive support groups.

LadySybilLikesCake Sat 24-May-14 16:24:51

Hi smile

I have this, I was diagnosed 4 years ago. I'm supposed to be working at the moment so I'll pop back later.

LadySybilLikesCake Sat 24-May-14 18:10:21

Sorry.

As Moid says, everyone is different. I've had a few relapses but there's been no lasting damage (touch wood). They won't prescribe any medication for this unless there's been two relapses or more within the space of 2 years, but they do recommend high dosages of Vitamin D as they have found that this helps, 4000 um a day I think but please ask him to check this. It does really help with fatigue and pins and needles.

Best thing to do is take each day as it comes and try to remember that everyone is different. The MS clinic and the chat rooms can be scary as people who are very unwell will use them, so he won't see those who are otherwise healthy and functioning as though there's nothing wrong. It'll take time to sink in, but it won't stop him from living smile

Im going to get him some vit d tomorrow. I cook so i can make sure he eats well. I dont want him to google but i dont think he can help himself.

He has a second job. Thats where he is tonight. He has been working so i can stay off with DD longer. We do have critical illness cover but it looks like they will makeany excuse not to pay out. We have a confirmed diagnosis from a neurologist but the policy mentions sensory impairment. He is extremely fatigued and his legs are very painful. He also has trouble with his speech. Its just another source of worry that they might not pay out. He works in a call centre so the speech thing may cause issues.

Thank you all for replying. Im sorry you all have this to deal with but i really appreciate the advice. It has helped me so much to be able to come on here and write my worries down.

I do hope your ladysybil is lady sybil ramkin. I am a massive pratchett fan :-). I may have to get my books out for a bit of escapism.

LadySybilLikesCake Sun 25-May-14 00:38:40

There's no need to be sorry smile I'm a fan of Downton Abbey blush I like Mr Pratchett too and I write children's fiction.

His speech should come back but it's possible that he's had a small relapse to cause this. They can give him some steroids, I think there's a 6 week window so it depends on how long he's been like this. It speeds up recovery and minimises damage as far as I'm aware, but they can't give them too often. I found acupuncture helped with the pins and needles, but it's hard trying to find the right person and it can be hit and miss whether it's effective. The Vitamin D really helped with the fatigue and the leg pain, they have noticed that a lot of MS patients have a deficiency in this and the deficiency causes leg pain and fatigue. They can also prescribe mild amphetamine based medication to help with the fatigue, provigil and amantadine. I tried amantadine but the vitamins worked better.

You'd need to check your policy really carefully, he can also apply for DLA as he's knackered. He should be covered providing he didn't have any symptoms before taking out the policy but you're right, they do anything not to pay out. Bastards.

I hope you're OK, it must have been a shock for you too thanks

How lovely that you write. I would love to write but i dont have the creativity for fiction.
We dont know how long we will be waiting for a clinic appt so they may miss the window. I will def get him some vit d though as the leg pain and fatigue are causing him the most problems at the moment.

Ironically i was investigated for ms a few years ago. Thankfully i was clear but when he began mentioning his symptoms i got him to the gp asap. I didnt tell him my suspicions although he figured it out from google. It wasnt as much as a shock for me i dont think. I dont think ive taken it in yet though. I do a good line in denial!!

He has got used to looking after me. I suffered a spinal injury a couple of years ago which left me with limited mobility and chronic pain. Thankfully surgery has helped a lot but i have lost my career. He has always felt the need to be the provider. I think he is just worried about not being able to look after me and DD. I remember how scared and low i was when i thought my injury was permanent. I just wish i could take it away.

He earns a good wage and so do i but the policy would take the edge off. He had optic neuritis once when he was 14. He has never had any other symptoms until recently. He has had the poly for three years. I just assumed with something like ms it was black and white. He has it so they pay up. Sadly this doesnt seem to be the case. We can manage without it though.

Thank you for the kind words though. Ive not spoken to anyone in real life. Ive been supporting him or looking after DD. I will have to get him helping me at the stables. Horses always soothe my soul so they may have the same affect on him smile

Moid1 Sun 25-May-14 08:48:08

The other thing was I was in real pain in my hips and lower back. I found a specialist massage therapist and 4 or 5 sessions with her really helped. Now I jut go and see her every 3 months or so.

Though I haven't tried it, magnesium is meant to help with leg pain. I used to find it difficult to sleep because my lower legs were so tight. No longer get that so must be doing something right!

LadySybilLikesCake Sun 25-May-14 08:57:10

As long as he declared the Optic neuritis when he took out the policy he should be covered. You need to be really careful with them.

I'm back at work for an hour so I'll answer properly in a bit smile

Footle Sun 25-May-14 08:59:44

Don't buy vitamin D off the shelf. A stronger supplement can be prescribed.

LadySybilLikesCake Sun 25-May-14 09:03:06

I bought some 1k ones from Boots over the counter. There's loads in a packet and were 3 for 2. Bargain.

weird2014 Sun 25-May-14 09:23:46

My daughter rides and I love being around the horses and ponies. Occasionally get back in the saddle myself, strange how animals provide a soothing effect.

I am taking the Vit D too. You can get big tubs from Costco if you know anyone with a card or there is one near you. Not sure yet if it has made a difference but on the advice of the nurse are giving them to the children. Sunshine is a limited resource where I live.

Not sure about the CCI cover, have they given you cause to believe they won't pay?

If your DH is in the middle of a relapse it's entirely possible he will get back to how he was and life will just carry on. Looking back I've had several relapses pre diagnosis, all put down to virus or other causes and, as symptoms went away just carried on.

I am hoping the drugs will reduce the number and severity of relapses as the last couple have left me with ongoing problems with my hands which I am assuming is permanent.

I am still working out what this means for me. I know I need to reprioritise parts of my life. Easier said than done but I am learning to call on help and support where it's available, a shift in mindset for me.

MS seems to be so much more common than I realised! Lots of us about all getting on with our lives in different ways. I've found it helps to come on here and ramble on a bit and listen to the kind words of others.

Its been so helpful coming on and seeing replies thanks Hes gone off to his second job again but then he has no more work till next monday.

We have just filled the claim forms in. He never needed to declare any previous medical history as it is through his employer. The optic neuritis is documented but as he was so young when he had it ms was never mentioned. He has not seen a doctor for anything else since. The consultant we saw last week was sceptical that it even could be optic neuritis until he got the original medical notes. He said it was so unusual in someone so young it might have been something else. Having looked at the notes he said it was def optic neuritis. We will send the forms off and see what they say. No reason to think they wont pay out apart from mistrust of insurance companies grin.

He tried to book us a night away for this week. He wanted to be in the middle of nowhere but the place he liked didnt take babies so we cant go. He wont entertain a b and b. Wants to be in a yurt in the middle of nowhere! Hopefully the weather will be fine and we can go for a long country walk. Think he just needs some quiet.

He is a little concerned as his pins and needles have eased but have left pain and numbness in their wake. He is worried that this may be permanent. Its so hard waiting for the ms clinic. We need some information and RL help but we are just in limbo. Im so lucky that you have all been so good to me. It has helped a lot but i just wish his appt would come through so he can speak
to someone more knowledgeable than me.

I keep saying that it could be worse and i truly feel that way but i try not to labour the point too much as i dont want him to feel like i am minimising his illness. It is serious but to me its not the end of the world IYSWIM. Its such a hard line to tread. I keep giving him openings to talk if he wants to and if he does start talking of his own accord i go with it and let him take the conversation where he wants.

I have no family so havent had anyone to chat to when im alone. This thread has been a life saver smile

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