DH diagnosed with MS today

[Piffyonarockbun]

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?

Hi. One of the first things my nurse said was to get on Vit D and give it my kids too so I take high doses. I also eat as much oily fish as I can. I had got into bad habits of not eating lunch properly so now I make sure I do. I too could do with losing weight but hoping a healthier diet helps.

I am lucky as I don't really have any mobility issues. I walk a bit funny but can still walk miles so I get out as much as possible. Clears my head and gives me exercise.

Thanks for all your tips. Its great to have someone to talk to.

The recommended dose for MS patients is 4,000 units extra per day! My GP queried it with the neurologist as it's a massive dose, but they have confirmed (three times) that this is what patients should be taking. I eat lots of oily fish (rainbow trout is rather nice) so I don't take this many.

I joined the local gym but I'm working too much so don't have the time to go yet, I was planning on doing little bits but often. It's great that you don't have mobility problems, maybe this will help you too? The steroids can cause muscle weakness so it helps to be as fit as possible.

10,000 my nurse said!!

Nooo, that sounds too much! I'll just check the letter (incase I'm wrong)

Yup, 4,000 international units daily. There's also info here;

www.mstrust.org.uk/downloads/vitamind.pdf

"1 microgram (?g or mcg) is equivalent to 40 IU of vitamin D2 or D3.

1. How much vitamin D should I take?

Vitamin D status is determined by measuring the amount of 25D in the blood. The following categories for blood levels of 25D have been proposed8: Optimal greater than 75 nmol/l Sufficient 50-75 nmol/l Insufficient 25-50 nmol/l Deficient less than 25 nmol/l Using these levels, a UK study reported that more than half of the adult population have insufficient levels of vitamin D and that 16% have deficient levels during winter and spring10. While there is general agreement that levels below 25 nmol/l qualify as deficient, there is no standard definition of optimal 25D levels11. If you are concerned about your vitamin D levels, speak to your doctor."

This should equal 4,000 international units.

"Some MS neurologists are now recommending that people with MS and their family members take 4000-5000 IU vitamin D per day, some propose lower doses of between 800-3000 IU/day, while others advise waiting for more evidence of effectiveness from clinical trials before taking supplements."

She definitely said 10,000 I am sure. Can you overdose on it??

Yes. According to Dr Google, but the overdose is for levels over 40,000 so you should be OK. It's best to get the levels checked by your GP though.

www.vitamindcouncil.org/about-vitamin-d/am-i-getting-too-much-vitamin-d/

This can lead to a condition called hypercalcemia (too much calcium in your blood), which can cause a variety of symptoms, including:
fatigue.
loss of appetite.
weight loss.
excessive thirst.
excessive urination.
dehydration.
constipation.
irritability, nervousness.

Thanks. I will check it, maybe I misheard it. She did say not to get the ones with calcium though. Half those symptoms sound like MS. Reminds me of when they gave me lists of side effects for dmts, things like fatigue, anxiety, low mood, tingling etc. How would I know the difference?

You can buy high strength ones in Boots (1,000 units per pill), buy one get one free seems to be on a lot. Vitamin D deficiency also sounds like MS - fatigue, pins and needles, pain, head fog. I suppose if you're taking the right dose and you start to feel better, then it works.

I think it does something to the calcium so you absorb more than you should (hypercalacemia or something). Your body's just a balance of chemicals. If you have too much of one, it affects others and can put you off too. Likewise, if you don't have enough of something, it can affect other things which also puts you off balance. Medicine is all about balancing the chemicals and getting rid of bugs Surgery is chopping things out.

Much love to you piffy. Dh was diagnosed when youngest was 4 months old, that was 17 years ago and he is still working full time, and fully functioning. He has had periods of illness and has to not let himself get too tired. He is also on tysabri infusions which have been great.Does your dh have an ms nurse, if not get the gp to refer him. Also seeing a neurologist regularly will help. This is the worst time for you and dh, its almost like a time of grief. But things will settle down and get better, the main thing is to be kind to yourselves and to each other. Many warm thoughts going your way xxx

im sorry to ressurect this after so long. i did take your comments on board but i wanted to hide from everything so tried to block it all out. DH took a couple of months off and is now back at work full time. He started treatment which in itself is rubbish but we cope. The insurance was initially turned down but only because he hadnt had MS for six months so hopefully that will come through when the six months is up.
We are really struggling financially so im down to go back to work in october.

im posting today cos DH just emailed me from work to say he feels dreadful. iv been watching him this week and he moves like an old man. its breaks my heart to think that just a few months ago he was fine and now hes not. im scared its amother relapse. he only recovered from the last one a few weeks ago but it looks like he has permanent damage to his eye and legs. its just so awful. im sorry. i just needed to get it down. i cant say anything to him. i dont want to scare him by showing him im upset. iv kind of managed ok up to now by just getting on with it but he looks so tired and old recently
our little girl is such a joy. its just such a kick in the face that we got our longed for baby and got a grand total of three months to enjoy her before this grenade was lobbed into our lives.
im just having a bad day i think. we go to the ms society each week and we see people in varying stages but he seems so badly affected already. his mind goes, he cant speak properly in addition to the physical stuff. im just scared. the only two people i could talk to arent available. my dad died and i dont want to upset dh. dont know what i wanted to achieve posting this. think i just wanted to get it out

Just seen this. I hope your DH is OK. MS can be very up and down and its very hard to know what is a relapse and what isn't. Get him to seek some medical help though as they can best advise. Is there a nurse involved?

I am sorry it seems so bad currently, you both need some support. I've found that over time you understand more what is normal for you and adjust what you can but it takes time.

I don't really have any words of wisdom but just wanted to respond.

thank you for responding. he fell down the stairs yesterday and hurt himself. nothing major but another reminder thats hes not 100%. im feeling better than i was the other day. i just had a wobble i think.

his nurse brushed him off on friday so hes going to contact her again. shes not the best sadly. she forgot to order his medication for a month so there was a delay starting. she alters appts at a moments notice. jut a bit wooly i think .

Oh dear you are having it bad. Hope he's ok after the fall. A good nurse is so important, is there any option to change? What medication is he taking? I have copaxone. It's been fine but difficult to know how much good it's doing. I had a little relapse recently and I hope that it was the medication preventing me from having a bigger one.

The first few months after diagnosis are horrible in my experience but I do feel better now that I understand it more and am learning some ways to adapt. The future still scares me rigid but I am learning to enjoy the present more, hopefully you will together be able to work it out. Your DH is lucky to have you.

I have a lovely friend with MS and she has not had a proper relapse since starting a once a month infusion of Tysabri, also in the NE, she goes to the RVI, I know she highly rates the consultant there too. She's been relapse free for almost 2 years now although occasionally gets mild symptoms, nothing like it has been.

he is on avonex at the moment. it knocks him for six but its only a once a week injection. hes only just come to terms with that. i think hes frightened that his nurse might change his meds to daily injections. hes not great with needles, i was so proud of him for managing to inject himself once a week. hes due to see the consultant soon but hes going to give the nurse another nudge tomorrow.

i think it just that we are struggling to get to grips with it. i think we are just starting to see what our life will be. my own dad was in a wheelchair (rugby injury) and i still adored him but i know dh is sad that dd will only know him as he is now. not the rugby playing strong man he was . equally i think im going to have to give up my own dangerous and demanding career due to my own health issues so hes not alone in that. we all change. its just he has a name for his changes. mine are just old age .

i know i waffle but youve been a great help. thank you

Is the RVI good for ms care? I am due to start attending soon

I dont think they would change his meds yet. I read that Copaxone which I take takes six months to build up to a therapeutic level (don't know about Avonex) so I think they need to be given time to work. He does need to nudge the nurse along though as he/she is your first line of support.

Sorry to hear about your DH.
I have MS and have recently been told that they believe it to be progressive rather than RR. There is no treatment.
But, and this is the reason to post, is that I have found that dietary changes have had a huge impact.

I know it sounds dull, but: I eat mainly raw, no alcohol / diet coke etc and 100% vegan. I try and do some exercise every day, but that's not always possible depending on symptoms.
Speaking from the other side, the worst part about ms is being made to feel a patient. I don't want to be different, I just want to get on with life and enjoy every second.
Not sure if that helps, but... good luck!

I was diagnosed with MS about 25 years ago and truly thought it was the end of my world. At the time I could barely walk and numbness, pins and needles, eye disturbance and dreadful weakness and overwhelming tiredness. I recovered from most of the symptoms over about a year and changed my job and lifestyle to make sure I never over exerted myself because I found tiredness would bring on an attack. Now I'm almost. Symptom free to the point that I even go to the gym regularly.

When I was first diagnosed I wanted to move to a bungalow, give up work etc but my GP gave me some very good advice-she said don't make huge changes like that because your MS may never get any worse, and she was right. I know how devastating the diagnosis is and I also know some people suffer with real debilitating but remember there are loads of us getting on with our lives and you would never know we had it