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DH diagnosed with MS today

71 replies

Piffyonarockbun · 19/05/2014 23:30

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?

OP posts:
chocolatelime · 25/05/2014 20:17

Hi Piffy, so sorry to hear that your DH has had this diagnosis. It must have come as a terrible shock to you both. I do know exactly how you feel as my DH was diagnosed 4 years ago when he was 38 years old with RRMS.

It came totally out of the blue when he started experiencing numbness and pins & needles down his left hand side. It progressed until he was totally numb on one side only and he experienced weakness, fatigue and some visual issues. It was extremely frightening at the time. But the good news was that gradually all those symptoms went away and he returned completely to normal within a couple of months.

Since then he has experienced other relapses although not as severe as the first one. Sometimes he can have symptoms for a very short time and then they go away. He had a period of dizziness last September and fell over a couple of times but then was completely fine.

The diagnosis was life changing BUT to be honest he has generally been very well. We try to deal with everything with a very positive attitude and I think that this really helps. The children (now 12 & 10 are very understanding) but mostly we just get on with our life. We try not to worry about what might be around the corner but make the most of what we have now.

My DH is taking Rebif by injection 3 times a week to minimise the effects of any relapses. He does find that he has side effects to this medication but the benefits outweigh the disadvantages. It is likely that he will be changing his medication later on in the year, but again we will deal with that when it happens.

I remember when he was first diagnosed, it felt like life had come to a standstill and I felt angry. But I soon realised that although this was not the life that we had planned, and we were heading down a new path along with all the challenges, but it was still life and we would deal with whatever we had to face.

4 years later he is still working full time and we lead a busy and normal life. Sometimes we have to make adjustments, but we definitely haven't let it drag us down.

Everyone is affected differently by MS, which is why it is so hard reading information about it online. However, a positive attitude can make a real difference. Anything I can help with, just let me know. Smile

weird2014 · 27/05/2014 09:07

Getting away sounds a good idea piffy. I've definitely needed time and space this past couple of months.

ChairOfTheBored · 27/05/2014 09:14

Hello there. So sorry you are going through this. DH was diagnosed with RRMS in 2011 - like you we have private health cover so we're able to access consultants and MRIs fairly swiftly, which meant it was diagnosed after his first 'attack', which is a small mercy when you hear of the years some people wait with the worry and uncertainty of not knowing what is going on.

We we're told to 'wait and see', and he went for three years without any further treatment.

Since his diagnosis he has had maybe 1-2 flare ups a year. Mostly fairly minor, though the last one affected his speech, and the consultant prescribed steroids. He is now under the care of the same consultant at an NHS hospital! and is considering whether he wants to start the disease modifying drugs. Our thinking is that if we can keep it to 1 minor flare up a year, then that is liveable.

We've also made some lifestyle changes which seem to have helped. He takes a v high dose vit D (I agree with others, the over the counter stuff is too low, just at the preventing rickets level, so see if a doctor can recommend a higher dose. We got a years worth off the internet at 5000somethings, compared to the 500something OTC version.). We eat less meat, and more pulses and fish. Nuts and seeds have something in the called GLA, which is important in nerve function, so I add these to porridge, soups, stews etc. I don't know if it helps physically, but it does give a sense that there is stuff we can do to help, which helps mentally with coping with the randomness.

DH makes sure to avoid getting over tired (not easy with a baby I know!).

Everyone's MS is different, and to some extent the uncertainty is by far and away the toughest part. DH hasn't told anyone bar his parents and (during the last attack, which meant he couldn't write easily) his boss. We life life as normal, but perhaps a little more 'gather yea rosebuds while yea may', taking this as a reminder to make the most of what we have now, and not put things off.

Panga63 · 27/05/2014 09:39

DH was diagnosed well over 20 years ago (had symptoms for 5 years before that) and has had good support over the years from our GP, MS nurse, neurologists, physios, etc. Although he now no longer works he is the FT carer for our DC whilst I work FT. He doesn't let the fact he is a wheelchair user nowadays get in the way of living his life and being the taxi for teenage DCs IYSWIM.

I won't deny it is hard and feels unfair when first diagnosed, internet stuff can be a bit doom and gloom, and worries about the future can be overwhelming, but do look at the MS website for helpful info, look at diet, and remember with RRMS he will have long periods when he feels fine. Your support and good practical and emotional support of friends and family for you all will help with the shock he is feeling right now.

FiloPasty · 27/05/2014 09:57

I think my 26 year old brother is about to be diagnosed with MS, he has lots of the symptoms described by other posters. The neurologist hasn't mentioned MS but he's had an MRI and is awaiting further blood tests and a lumbar puncture.
I'm so worried about him, he's been signed off work again (he has a very manual job so am uncertain if he can go back) still awaiting diagnosis, it all seems to be taking so long. To add to it all his girlfriend is pregnant and they were/are planning on moving in together, he had been working overtime to afford it all and now he is on SSP :(

LadySybilLikesCake · 27/05/2014 11:13

Vitabiotics do an optimum level pack which is available in Boots. It's a 1000IU dose.

Hi, Filo. I had a MRI and a lumbar puncture to diagnose mine too, Nottingham University are currently undergoing research on using different powered MRI scanners to try to diagnose it quicker (they have noticed that MS lesions in the brain only happen around blood vessels whereas other lesions from infection etc can occur anywhere). It does take a while to get diagnosed so they have done the research to try and speed things up. It's still early days though and they are looking for patients who have been diagnosed for help. I've helped.

If he is found to have MS there's a 6 week window where he can be given steroids which will lessen the symptoms and speed up recovery. Stress can make symptoms worse so he needs as much support as he can get.

Thanks
hildasmuriel · 27/05/2014 11:29

This reply has been deleted

Message withdrawn at poster's request.

LadySybilLikesCake · 27/05/2014 11:55

My first neurologist was a bit um... yeah. I told him my symptoms, he did a few neuro tests, and then said I couldn't have MS as I'd be dead with the symptoms I had. He only organised the MRI 'for reassurance' Hmm It showed lesions so he looked like a prat when I went back. He referred me to a specialist at another hospital but I had the lumbar puncture first, just to make sure, as lesions can be caused by infection etc.

I ditched the (very stressful) course I was on which really helped things, and now I have a fab job and I'm happy. I take care of myself (most of the time) and it's made a huge difference. Having MS isn't always a negative thing, it does make you reassess your life and appreciate the things which you may have taken for granted. I am of the 'sod that' mentality though, which does help. I worked in the NHS for years before I became unwell and a positive mentality really can help.

Panga63 · 27/05/2014 12:06

Agree with the positive, stubborn, "sod that" attitude - my DH in a nutshell Grin

LadySybilLikesCake · 27/05/2014 12:26

Grin It's the best way.

FiloPasty · 27/05/2014 16:11

Thanks thank you everyone! really reassuring! he didn't really have any symptoms just woke up one morning feeling really numb down all one side, called an ambulance and initially they thought it was a stroke but his speech wasn't effected, so he's been having further tests.
He was given steroids and has had an MRI. My mum is an ex nurse, so it's her who thinks it's MS although they won't say anything until after the Lumbar puncture. I just hope he can stay positive, he is just so tired.

LadySybilLikesCake · 27/05/2014 16:38

Same here, Filo. I woke and I had a strange feeling on my face, as though someone had sprayed deep heat into it. I went to the GP and the dentist, the GP did a couple of blood tests but they came back clear and he did nothing else. The dentist referred me to the dentist at the hospital. A week later I woke feeling drunk and had problems with my balance. The 'deep heat' sensation had spread down my back so I went back to the GP who pretty much told me I was making it up Confused I went to see a different GP who referred me right away via fax. 2 weeks later and still finding it hard to keep my balance and after finding out the hospital hadn't received the referral I booked a private appointment and was seen a few days later. I had the MRI on the NHS 2 weeks after, and the LP 2 weeks after that. Steroids do help but they need a heck of a lot of protein to do their job. If your brother is't eating enough they will get it from the muscles, so will cause muscle weakness. He really needs to boost his protein intake for a while to help them to work, so fish, eggs and meat.

There's loads of things that can cause numbness and weakness, so it's not always down to MS - Vitamin B12/D deficiency, diabetes, trapped nerves etc, so it's wise not to jump the gun, especially as he's already very stressed.

I hope he finds some answers soon though Thanks

weird2014 · 28/05/2014 14:54

Sorry to hear about your brother filo the tiredness can be overwhelming and waiting for diagnosis must be awful, I was the other way, I wasn't expecting it at all. Those of you supporting your family members with this are doing a great job, support of family and friends is so important Thanks

I am trying to have the sod that attitude! It's not easy but I do feel that after the shock of diagnosis I want to get on with my life, albeit that bits of me want to twitch, go numb or be hyper sensitive as they wish.

Do others get the weird muscle twitches? Every day a different bit of me seems to set off doing this at the moment. I have to see the funny side really!

WhisperingPea · 28/05/2014 16:01

As other posters have said MS is different for everyone. I was diagnosed 9 years ago after a few episodes of mainly pins & needles, numbness, Lhermitte's and dizziness with fully recovery after each episode. Each episode took about 8-12 weeks from start to feeling normal again.

The consultant said it was RR but mentioned that sometimes MS can be benign. I clung to the hope that mine would be benign. Since diagnosis I've only had one episode so it does indeed seem to be benign. I'm fine and symptomless other than if I've been very busy and active, when one foot gets a bit "flat" and I'm more tired than I'd expect - but being tired might not be the MS!

I'm also in the North and the James Cook Hospital was fantastic. With my relatively mild symptoms and full recovery each time I refused medication to see how it developed.

The diagnosis was shattering - at the time all I could see was a life of increasing disability and reliance on others - I still have the Dignitas details just in case. As I've come to terms with it and time has passed I keep a positive mental attitude, meditate and enjoy life. I've given up competing for the latest car and a huge house and spend more time on people and experiences than possessions.

I hope you and your family cope OK and he is better soon. If I can help or you've any questions send a PM.

Piffyonarockbun · 29/05/2014 01:38

Thank you for all the replies and experiences. Iv not been back for a few days as iv felt a bit low myself. We were offered a choice of the RVI in Newcastle or James Cook. We opted for James Cook as we have heard good things about it. Its just the waiting now. I dont think the appt will come through in time to help with this episode sadly.

We have sent off the insurance forms so will waitand see what happens.

It made me feel better to see so many replies. I hadnt checked in a couple of days and thought i would have no replies. I do feel very alone. I cant just leave DD with him and go and talk to a friend. Hes been able to do that but when i left them she just screamed the house down.

We are going out with friends tomorrow and have a wedding on Saturday so some nice things coming up. He seems better in himself. Not as low. Now its my turn i think Smile

OP posts:
Moid1 · 29/05/2014 07:11

Of course your low, it totally lacks your world upside down Your doing an amazing a job, supporting your husband and daughter. Do you know anyone in real life you can tell?

If he is feeling up to it - he could look at Overcoming Multiple Sclerosis, that's the diet I follow. Our Facebook group is full of amazing people, talking about 10k's they ve run, how many years they have been relapse free,going back to work and sometimes they just want a moan. We also have partners of MS sufferers. Anyone welcome. It's also a closed group so your friends don't know it's there.

Take care, drink too much, dance and see your friends at the wedding.
xx

WolfMoon · 30/05/2014 13:40

Pleased to hear that you're getting things sorted out. James Cook has an excellent reputation, I'm sure you'll receive amazing care htere.

Hope you're having a lovely time with your friends today, and that the wedding is nice tomorrow!

LadySybilLikesCake · 08/06/2014 23:42

How's things going, Piffy and all? Smile

weird2014 · 10/06/2014 08:28

Hi. I am doing much better thanks. I am beginning to understand what people mean when they say it causes you to reevaluate your life.

Some symptoms are, I think, here to stay but they are manageable so next step is to do all I can to stave off any more relapses. Oh and just enjoy life a bit, hasn't been much of that lately.

Hope others are OK too, it's good to come and catch up on here.

myrtleWilson · 21/06/2014 15:36

Hello,

How are you all? MDH also has MS. He has been lucky insofar as it was termed 'benign MS' although am not sure that is used as official category now. He's had it for probably about 20yrs but only diagnosed about 10yrs ago. In that time he's had a few attacks but with nothing more serious than the pins and needles sensation but I appreciate he is very lucky and also MS is so uncertain that there are no guarantees. We had a youngish daughter at the time of diagnosis (she is now a delightful bundle of 11yr old hormones!) and I was, like you sound, full of worry about what her future may look like as a result of her Dads MS. In hindsight I worried too much!

I hope the insurance comes through for you Piffy. We were able to claim on ours and the MS was much 'milder' for want of a better phrase (apologies if this causes offence) a well written supporting statement from consultant helped.

I'm also NE based but Dh uses the RVI - used it nominally as he has been fine for last 10yrs. He has had a couple of bad attacks in recent weeks - nothing long lasting but the unusual frequency promoted a call to the MS team...unfortunately as he hasn't used them for a while he needs to be re-referred by GP which seems a bit of an arse but hey ho!

LadySybilLikesCake · 23/07/2014 22:20

Hello, Myrtle.

That sounds really hopeful and positive Smile I've no idea what's happening with mine, the symptoms have all vanished Confused The neurologist said it was practically unheard of (I'm sure it happens though).

I hope everyone's OK and the heat isn't causing too many problems.

Thanks
weird2014 · 24/07/2014 22:16

Ladysybil that's amazing your symptoms have gone. MS is so weird! So pleased for you.

The heat is taking its toll on me and I feel like MS has really got stuck into me but hopefully some lifestyle changes and meds will help. Nothing unbearable but this is all so new I feel like I've been plunged into a whole new world! My nurse is brilliant though and has helped loads.

LadySybilLikesCake · 28/07/2014 22:28

I'm not hedging my bets just yet, you never know what tomorrow brings with this.

I'm sorry you're suffering Sad I tend to stay in doors where it's cool. Lots of water will help you too. I keep the curtains closed during the day as it stops the sun heating the rooms up. We look like layabouts though Grin

weird2014 · 29/07/2014 06:54

I think the thing is with MS is that you have to go with the flow more. I had a brilliant weekend, did loads, but then by yesterday just needed to chill and slow right down. I can enjoy being a layabout though!

I've never been good in heat anyway. I now have an excuse for it, same as I have an excuse for dropping and bumping into things which I have also always done.

I make sure I always have water with me these days. MS has definitely made me look after myself more so hopefully will feel the benefits.

LadySybilLikesCake · 29/07/2014 12:18

Smile I can't remember if you were told about the link between MS and Vitamin D levels? They have done studies and worked out a lot of MS patients have low Vit D levels. When they were given supplements it was found that they recovered better from a relapse.

Your weekend must have been fab. It's important to remember to live, I think. Everyone benefits from something to look forward to. Looking after yourself is good Smile I'm trying to cut out wheat in the hope that I lose a little weight (I'm 10 stone so just on the boundary of normal - overweight). It has done naff all though. Grr! I eat a lot of fish, veg and fruit (with milk and cheese etc). It's all organic. I do feel better but I can't budge from 10 stone.