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Husband diagnosed with MS need some support

(23 Posts)
jmh740 Sat 13-Aug-16 23:00:43

My husband has just been diagnosed with MS is there anyone with family who suffer from MS who I could chat to?

ApricotExpat Mon 15-Aug-16 22:01:28

Yes, in the same boat. PM me if you'd like.
It's not as bad a 'sentence' as it first appears...

Toddlerteaplease Mon 15-Aug-16 22:29:25

I've got it. It's not the end of the world! PM me if you like. grin

Toddlerteaplease Mon 15-Aug-16 22:33:35

Has he seen an MS nurse and what treatment options has he been given? flowers

Cornishclio Mon 15-Aug-16 22:34:02

My brother was diagnosed this February with it. Not yet on any treatment though as he not too badly affected yet. Just had a few episodes where his vision affected. Also quite tired but he still working full time and playing his golf.

TyrionLannistersShadow Mon 15-Aug-16 22:43:48

My dh was diagnosed in 2009 , totally out of the blue, and yes it was an awful shock at the time but 7 years on we've come to terms with it and it's just a part of life now. He's on Copaxone injections since his second relapse , which was a few months after the first and they seem to be suiting him. The first 12 months was the worst, very up and down both physically and emotionally, and we later found out that's quite typical, but after that things settled down immensely. He only sees his neuro twice a year now and his MS is classed as inactive. I wish we had known then what we know now, it would have saved a lot of worry and stress!

TyrionLannistersShadow Mon 15-Aug-16 22:44:31

Oh and please feel free to pm me if you'd like to chat

user1470269632 Fri 19-Aug-16 00:02:21

Hi jmh740

Gosh, I remember those early days all to well... I looked up and read loads of complete rubbish on the Internet (there's loads of quackery out there for gullible people who want a instant cure!); ignore those. They just want to make a fast buck/pound. I tried extra vitamins and minerals which did diddly nothing. You do need to stay away from echinacea though as it can stimulate the immune system. I would recommend though that you and your husband have a flu jab every year from now on. My husband has one, because if he went down with flu, I'd really struggle to cope. If I go down with anything these days, it takes me a lot longer to bounce back.

As for people to talk to in a position very similar to yours, register with the MS Society (which is free btw). On there you will find a mine of reputable information. They have a forum section which is split into different groups; you can look at other groups, but the one I think you'd find particularly useful is the relatives caring for a person with ms one. You can also request information leaflets which are comprehensive, but easy to understand, for both of you to read and assimulate in your own time. They cover all aspects of ms; different symptoms, benefits available, etc. You can request as many as you like and read them at your own leisure. Your husband may well find it easier to read leaflets based solely on his symptoms, which is very understandable, as it can be somewhat daunting. Depression is extremely common by the way and it's estimated that 60% of people with ms are depressed at any given time. I think it's to do with letting go of what you thought your future would be and accepting that'll change. I would say mine has changed, but surprisngly for the better. One thing I definitely hadn't anticipated!

It's worth attending any information days about new treatments that are in the pipeline, which is encouraging, plus information days about benefits. I'm sure there are benefits that you are eligible for, but don't know about. You can claim some benefits whilst still working. It helps, as I've found it's helped me purchase things to help make living my life with ms, much easier, safer and more comfortable. 😀 After all, I deserve it, lol.😂

I was initially diagnosed with the relapsing remitting form of ms, which is by far, the most common type. However, despite taking Rebif, the relapses were still rather frequent. This diagnoses was changed to the progressive relapsing variety (I don't tend to remit). I can still 'furniture' walk around the house, unaided and can usually climb the stairs. However, if I've overdone things or not been well, I se my stairlift. I've also had other minor adaptions to the house, to make it safer. It's worth contacting adult social services and they will assess your house and what needs doing. They fitted quite a few things for me, FOC, as my savings are less than £23,000. I've had an outside key fitted too, as one of my main symptoms is falling over, and when I fall, I really fall. The emergency services know exactly where the key safe is tucked very discreetly out of sight and they know the code to obtain the key. Even if someone did access the key, which they haven't done in man years, we have a burglar system too. At least then, our front door doesn't need to be smashed down😳. When I'm alone in the house, I carry a personal alarm around my neck. If I fall or something else occurs, I just press the alarm. Sometimes I can shout what the problem is, but other times, I can. Then hopefully the correct service is called. So far, so good! 😀
I'm now on a drug called Tysabri. I'm on about my 95th dose. We have 12/year, so I've been on it for quite a long time. There are a lot of old out of date stories on the Internet about PML; a very rare brain infection that can occur once in a blue moon. Whereas it used to mean severe disability/death, the neurologists have worked out how to minimise the damage so that the patient ends up with little/no additional disability. Your chances of developing it, depend on a blood test which test one's JC antibodies. I've deteriorated very little since being on this drug. My main symptom is fatigue, which for someone who used to run around at 90 mph, isn't easy to adjust to.

But yes, my number one rule upon diagnosis is to not panic. Maybe step back, and reassess your life!

All the very best. 😀

Toddlerteaplease Fri 19-Aug-16 03:52:22

User, The Panic about PML used to drive me nuts. I stopped going on the Tysabri Facebook site because that was all people talked about. They seemed not to realise just how rare it is and also the MS would just cause more problems. I loved Tysabri but my neuro wanted me to have lemtrada. Which I have to say has been a disappointment as its not made the difference I was led to believe it would.

user1470269632 Sat 20-Aug-16 16:14:15

I agree, Toddlerteaplease, about the PML. I've stopped going on those websites. I go to the largest dispensing unit in the entire country and its been running about 9 years. As I mentioned before, I'm on my 95th dose, probably more. The banners will come out when I hit my 100th dose! 😀
The unit has almost 400 patients and we've not had a single episode of PML. What most people don't realise is that f you do develop it, it happens very slowly. Hence why we're observered at the unit for two hours. One hour during the infusion and one hour following. It is extremely rare. I feel great on Tysabri and would be very reluctant to change to anything else or to another drug, or even a different dispensing centre(one's opened nearer to us, but I've not heard anything positive about this Neuro). Because I have low JC antibodies in my blood, my Neuro has anyone like me an MRI every six months and JC levels tested six monthly too. My present Neuro is very thorough!
It means that one day a month, I go to London, have my treatment, come home and go to bed. I suffer from fatigue anyway so a half five start in the morning to get there before the rush hour is great. It means we're back by about ten am. I have mine on the first Friday of every month. I can then be up and ok for the weekend!
I think it's normal for people to panic when they hear the diagnosis of 'MS', but even in the last eleven years since I've been diagnosed, new treatments have come onto the market.
If I'd known 11 eleven years ago, what I do now, I wouldn't have panicked. In fact that's something many of my fellow tysabri friends all agree on!
If anything, my life has changed for the better. I've learnt to slow down and actually enjoy life, for starters!😉
What is it about Lemtrada, you find disappointing, Toddlerteaplease? What changes did you expect? 😀😀 I'd be interested to know.

Toddlerteaplease Sat 20-Aug-16 18:58:24

If you go on the Facebook pages etc everyone on there seems to have had really good results. Not needed sticks etc anymore. All saying how great they feel. So I expected to feel like a new woman and not still be needing crutches. So am disappointed from that point of view. Also from seeing the MS team monthly with Tysabri I've seen them twice since January and the drop in support has been very tough. The nurse I see in clinic doesn't know me well and is not the one who deals with lemtrada so can't answer my questions. I was only the third person in the hospital to have it. Suprising since it's a huge teaching hospital. I was told I was at risk of a 'catastrophic relapse and being paralysed' if I didn't have it. So didn't have much choice!

nonetcurtains Sun 21-Aug-16 15:09:43

I have RRMS, diagnosed July 2015. I still count myself as a newbie and still have a lot to learn, so I'm not much help to you jmh740.
There is so much 'information' online and you won't know where to start, what to read, what info is useful etc.
As said above, the MS Society formus have been the most help to me. There are other MS organisations with websites/forums which I found quite 'cliquey' and not much use.
Take your time and don't try to find every bit of info, sometimes it better to not know something than to know the wrong thing. Sorry if that doesn't make much sense.
A lot of people seems to be very worried about telling others that they have MS, personally I have trouble not telling everyone I see that I have MS, even though most people don't know what it is.
If they are interested and ask what MS is and how it effects me I tell them it's an autoimmune condition that mean my antibodies attack my spinal cord and that mean I have all sorts of different symptoms at different times. At least then they know I'm not drunk when I'm staggering round hanging on to walls/furniture !!
Take care, take your time, don't try to take over things you husband is doing, just support him and let him do as much as he is able to.
You have a long road to travel, see you on the journey! x

Pericombobulations Sat 27-Aug-16 19:17:47

Can I just this, as I've just been given a diagnosis of MS, and feel a little lost at sea whilst i wait for the MS nurse to contact me to move forward. The consultant spent ages with me, but I still feel I know nothing.

She did discuss some treatment options of Techfidera or Lemtrada, but reading up on the MS Trust site, I am no clearer what to do for the best.

Help.

I've contact DVLA, car insurance and my work as I am due back this week after a holiday. I hadnt even thought of things like flu jabs - what else do I need to configure into my new life?

fraggle84 Sun 28-Aug-16 07:49:03

I was on tecfidera for 6 months and wouldn't recommend it, can you ask for Tysabri?

On tec I have awful skin flushes where my skin would go bright red and feel like really bad sunburn which hurt, I had awful stomach pain and sickness too

user1470269632 Mon 29-Aug-16 04:28:22

TODDLERTEAPLEASE YES, you're so right about various groups/forums being cliquey. I hate that; thankfully the TYSABRI group I go to in London is quite a lovely bunch of people. I sense the various nurses find us quite amusing as we're always chatting. They're great. There are many people there, and we discuss symptoms and other problems we're experiencing with our ms. It seems to me that other people with me know more than the experts.
As for telling people, the ms society do various publications for explaining MS to small children, one for older children, one for adults and also one for people in the workplace. You are protected by the disability discrimation act now btw. That came in around 2005, when I was diagnosed.
Also if you look at the effectiveness of LEMTRADA VS TYSABRI, then the later is better at reducing relapses.
We don't have those kind of problems with a nurse that doesn't know us. We have a group of nurses that hook each of us up and do observations before and after. The LAMTRADA nurse is usually the same one, but I guess you guys seem to be in and out a lot quicker. I'm sticking to my TYSABRI, despite the time it takes to drive there and have the drug administered. For the sake of remaining as relapse free as possible.

Weird2014 Mon 29-Aug-16 04:59:46

I have MS. Diagnosed 2014 with the relapsing, remitting type. I was having a lot of relapses each of which left a lasting 'gift' ie residual symptoms which wouldn't go away.

The first few months after diagnosis is really hard as there is so much to get your head around. The shock of being diagnosed with a lifelong illness with an uncertain progression, who to tell, what to tell, worries for children, financial implications, new drugs etc etc. My best advice is take your time. There is lots of support out there. Neuros are obsessed by telling you not to google but, whilst their point about there being lots of scary stuff is valid, there are also loads of good blogs, Twitter can be great and the MS Trust and MS Society are full of sensible advice.

Drug wise it is very much trial and error. I had 2 great years on Copaxone then out of the blue had 2 horrible reactions to it and am now on Tecfidera which I have taken for about 3 months with no huge issues. All drugs have side effects but there is lots of good advice about managing them and it is really down to how individuals tolerate them which is massively variable.

The drugs have, however, slowed down the rate of relapses and in 2 years have only had one mild one.

MS Nurses are worth their weight in hold but there arent enough of them. Try and get name of your husband's as soon as you can.

As a partner to someone with MS I would say it will be hard to get your head around. The support he will need will vary day to day, that's emotional and physical support, and will depend on his own MS as it varies so much. You also need good support. I think the hardest thing to understand for people without MS is fatigue. There are times I literally cannot move or speak. If your husband is staring at the wall unable to hold a conversation this is likely fatigue. Let him rest. Trying to jolt him out of it will not work, it is overwhelming. It will come at arkward times and is a total thief of time.

Above all, take your time, there is lots to absorb but it really isn't the end of the world. I have a great life. I keep as fit and active as I can. MS has introduced me to lots of lovely people. I have insight into lots of things that I didn't before. I have a better perspective on life because I take less for granted and know the value of living in the moment.

Good luck, always here to answer any questions or help if I can.

LuluJakey1 Thu 01-Sep-16 23:42:44

My FIL has relapsing and remitting MS- diagnosed about 20 years ago. On the whole he is fine- does almost everything he ever did. In the 8 years DH and I have been together, he has had 3 relapses and they take a while for him to fully recover from but he has every time. It is an inconveniance, helped by medication,rather than a death sentence - which is what the fear factor of it is.

user1470269632 Fri 02-Sep-16 14:06:42

Yes, I agree weird2014 regarding fatigue. That is a major problem for
myself. I sometimes wake up and feel more tired than when I went to bed. I
definitely need far more sleep these days. Maybe because of bladder spasm and feeling as though I've not fully emptied it. I can be up several times a night which almost definitely won't help that fatigue problem.
I describe my fatigue as trying to walk through thick black tar and feeling as as though I've got ten stone weights strapped around each limb.
When I am truly fatigued, I find it incredibly difficult to talk and anything else; forget it. I have been known to fall asleep mid conversation. Not because I'm bored stiff, but because I'm so overwhelmingly tired and have completely run out of fight. MS fatigue cannot in anyway be compared to be tired. I've been known to literally craw up the stairs and crawl into my bed. I just leave a string of mess behind me, because don't have the energy to put my shoes away and hang up my clothes. They just lie where they e fallen. Not like me whtsoever, so DH and the DC automatically know mum's in bed, probably fast asleep!

Killermouse Fri 02-Sep-16 14:30:00

I'm just over a year on from your position. My advice would be talk to each other,I made the mistake of being too scared to talk to my husband about it in case I upset him,even though when we eventually did talk about things we were both worrying about very similar things!
The other one would be if you're frightened don't make the mistake of joining of fb groups too soon( I did this and ended up petrified and needing counselling myself!) and def keep away from the American based ones.
I think we have a much closer relationship now as we live in the moment more and can laugh about the small things that used to be the big things,if that makes any sense? If you'd like to pm feel free,know it helps to have people that truly understand.

jmh740 Mon 17-Oct-16 22:15:21

I'd posted this before we went on holiday and forgot about it, hope the offers of support still stand.

Oh has been having a relapse since mid August it's been hard. I have been to one appointment with the MS nurses with him and saw the consultant he is now on techfidera he had bad flushing the first couple of weeks but it doesn't seem to bad now it's been 5 weeks he is still working full time but is going to work coming home eating and then straight to bed. Dd is 9 she is struggling with dad's illness she wanted to have a daddy day on Saturday they went to the shops for an hour and KFC for lunch and that wiped him out for the rest of the weekend. He saw the nurses again last week ( on his own I have a temporary contract in a school and it's difficult to take days off) they mentioned maybe steroid treatment and some gabapentin for neuropathy in his feet just waiting for apresecription to be sorted now.i think I kind of expected to be offered lots of help and support when he was diagnosed but it hasn't happened the MS nurses are a nightmare to get hold of they have no phone just a message service oh has been left waiting 2 weeks for replies to him messages which is frustrating I know it's not their fault they have so many people to look after but it feels like we've been left to fend for ourselves. Oh has had his driving licence changed so it has to be reissued every 3 years which has hit him hard.im still not sure the best way to help and support him and the children.

verytiredmummy1 Sat 22-Oct-16 07:01:51

I have MS. It will get easier I promise. Stick to the ms society or ms trust for info. Nurses are incredibly over stretched and mine takes forever to reply. my neuro once said to me that no one knows what will happen in the future and this is true of MS as its unpredictable but you have more of an idea what could happen. I hate having ms obviously but in some ways it's enriched my life. I'm very mindful of making the most of everyday. Please pm me if you need to
chat Xxxx

OvertiredandConfused Sun 30-Oct-16 21:32:07

I second what others have said about it getting easier. I have RRMS. For several years I lived with it with no major impact on my life. About this time last year I started quite a bad relapse that seemed to last for several months and left me with quite limited mobility. I was walking with a stick, was completely wiped out by going to work and generally had no energy.

My neuro persuaded me to try some IV steroids and it made such a difference. Fortunately for me, I also had round one of lemtrada about a month after the steroids. I'm seven months post now and it's worked brilliantly for me. I am, almost, back to where I was before my relapse.

I very much share your experience of the MS nurses. Absolutely nothing against them personally, they do their very best, but in practical terms getting hold of them is just a nightmare. A few months ago I took a half day off work to go to my six monthly routine appointment. The previous one had been cancelled altogether. When I got there, and occupational health therapist was standing in for the MS nurse! Totally pointless.

I found a couple of the Facebook groups are really helpful and I also like the Shift MS website and forum.

It's still really early days for all of you. You, your DH and your DD need time to adjust and identify your coping strategies. You also need to learn to trust your instincts when it comes to treatments. MS affects all of us in such different ways, there is very rarely a right or a wrong answer. If a treatment is working for your DH then stick with it. If you don't think it is then do ask questions and see if he can try something different.

It is without doubt a condition that you have to very actively manage yourselves. I have to have monthly blood test's for five years following my treatment. I collect my own results every month and enter them into a spreadsheet. My neuro gave me the bottom and top value figures for each column and I have his email address to contact him directly if I stray towards them. Otherwise, I'm pretty much on my own.

You can't let MS rule your life, but nor can you get away (for very long) with pretending it isn't there either. Finding the right balance is tough but you will get there. Wishing you all lots of luck

verytiredmummy1 Mon 31-Oct-16 09:51:19

overtired could you recommend some Facebook groups? I haven't found any good ones yet xx

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