@erinlidia

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erinlidia

Supporting newly diagnosed boyfriend

Hi everyone :) I'm here to ask how to support someone I love more than anything. Sorry if this is long, I just want to set the stage. My boyfriend of 8 years and I moved in together a few weeks ago. It's been an awesome adventure so far, and we're so excited about the future. A few months ago, he started experiencing symptoms - significant numbness, muscle weakness, difficulty walking and using his left hand, light and heat sensitivity, etc. These symptoms eventually subsided. He saw a neurologist, got several MRIs and other tests, and went for the follow-up appointment two days ago. The MRIs found lesions and inflammation on his upper spinal cord and in his brain, some older, some newer, some currently active. He was diagnosed with relapsing-remitting MS, and prescribed Tecfidera. He is 27 years old. It's a huge shock, especially as we're just starting our new life together, and wondering what this means for the future. The medication is so expensive, there's no way we can afford it, we'll have to find some way to subsidize it - we live in Canada. I am very driven to research everything there is to know about MS, and to talk to him all night, and be extremely supportive, and plan for our shared future. I suppose this is my coping style. He is very driven to distract himself with anything and everything. He says he 'feels nothing' and doesn't want to talk about it. He's not in denial. He says 'it is what it is' and is willing to start treatment. But I think he's in shock, and understandably so. I don't want to force him to talk about it, or give unsolicited research-based advice, or treat him like a 'patient.' His family is already asking tons of questions and being very overprotective, and it's obvious he doesn't like that. Do any of you have advice on supporting someone newly diagnosed, especially if your loved one is a young man? Or, are you a young man with MS? What are some ways I can be supportive in the aftermath of the diagnosis and throughout the course of our lives now that MS has entered the picture? Any comments, feedback, suggestions or advice is hugely appreciated. I am absolutely committed to being the best support I can be, and tackling MS together as a team. Thank you! ~ Erin

naomih

@naomih

Hi. When was diagnosed I told everyone pretty much what your boyfriend has said. I just felt that by over talking or analyzing with others made it an issue. I can't plan for the future because that brings fear. Just be there if he needs it and don't take it to heart he probably just wants life to be like it was before. Talking can be overrated anyway ?

Stumbler

@Stumbler

@erinlidia , first things first, MS is now a manageable condition. MS is one of life's taboos, no-one speaks about it, until it comes to call. It is not a one way express ticket to a wheelchair! But, it can be a bit undermining for us blokes. It tries to reduce our masculinity. And, then there is the fear of the unknown. but, it's really good of you to come here to support your partner. He's presently starting on a bit of a journey, which goes through defined emotional phases :- 1. Shock and Denial 2. Pain and Guilt 3. Anger and Bargaining 4. Depression, reflection, loneliness 5. The upward turn 6. Reconstruction and working through 7. Acceptance and hope It will probably be easy to see where he is at the moment. Give him space to get his head around this diagnosis, but be there to support him and talk about it, when he wants to. Try and help him find a balance in his life, trying to avoid extremes. Have a healthy, balanced diet. And, see if you can help banish stress from his life. I know, it's not a good time to avoid stress. But, stress is a major antagoniser of MS and does nothing constructive. There's some reading material here, http://www.mstrust.org.uk/shop/products.jsp?catid=56 , which is from a good source, which may help you. But, let your partner seek this knowledge at his own speed, rather than you push it in his direction. There's a lot of experience on this forum, so we can help support you, to support your partner.

erinlidia

@erinlidia

Thank you both! It's good to know there are people out there with valuable perspectives and insights on this, I appreciate it guys :)

melissag

@melissag

Hi @erinlidia, I've just sent you a private message, I'm also in Toronto and happy to talk!

cameron

@cameron

So things have changed in Canada, have they? When my brother-in-law worked there, he used to say the public health service/provision was better than the UK's.

Emzi

@Emzi

My partner was diagnosed end of last year aged 25. We have recently moved in together. Happy to talk x

simone2

@simone2

Hi, My husband brought me a book by Judy Graham ms naturally when I was first diagnosed it still helps me 4 years later, your boyfriend might not want to read it yet but it might help you.

jonnydrama

@jonnydrama

I don't take it myself but there is a drug called LDN (low dose naltrexone, think that's how it is spelt) which is low cost and supposed to be very effective. I'd recommend researching before committing to it (might be for PPMS not RR) but worth a read at least.

cherish

@cherish

@erinlidia I just think your concerns are very 'admirable' as some (not all) ppl don't want to deal with it and for you to be the one that dosnt have ms but wants to help the one with ms is great. I'm taking my hat of to you, really. My partner of 14yrs dismisses most things I try to teach him on my experience and journey but I think he prefers to deal with it as it happens. I know he loves me so much but I also understand his way of dealing with it. And tbh, I'm a bit of an ignorant mser too and joined shift.ms to help as I'm now ready to deal with it a little more. Stick in, keep talking to people here. Great site, great helpers and great advice! Lisa :) :) xx

erinlidia

@erinlidia

Thanks for your responses everyone :) @cameron Generally health coverage is very good, for most prescriptions. I pay next to nothing for my anti-anxiety meds that I've been taking for half my life. Apparently his neurologist needs to send in an application to Health Canada to apply for an exception to the Ontario Drug Plan in order to get Tecfidera covered, but he says it's doable. My only frame of reference is a family friend who pays $1500 for her MS meds every month, and I sure hope that won't be the case here. My boyfriend is going to call his neurologist today to get that process started and confirm that he wants to start taking Tecfidera. It seems to have a good safety rating overall. @emzi It would be great to talk to someone else in a similar boat, I'll reach out once I wrap my head around things a bit more. I've been going through a bit of an emotional roller coaster coping with the news, while he avoids talking about it at all, says analyzing it just upsets him, and he just wants time and distraction right now. He's said it's totally okay if I talk about it with my friends and family though, he's not hiding it, and he knows I cope with things by talking about them and he wants me to have my own support. One other thing - He's had a cold the last couple of days, and last night, he told me his right hand has some 'weird sensations,' that it feels all numb. This is after only a month of symptom remission. I'm just wondering if this is an early sign of another flare up, or if the cold is powering up his immune system, so his immune system is hitting his nervous system harder right now. Thanks again for reaching out, it's so appreciated, I just want to be able to help the best I can.

Stumbler

@Stumbler

@erinlidia , looking at these present problems, you're quite right about our compromised immune systems causing issues when dealing with a run-of-the-mill infection. In these circumstances, old/existing MS symptoms can play up. it's referred to as a "pseudo-exacerbation". So, whilst the immune system is active, the MS symptoms can get worse. But, they should quieten back down again, once the underlying infection is resolved. It is recommended that MS sufferers get the annual flu jab to try and avoid that particular bug and the implications for our MS.

cameron

@cameron

Going on from what @Stumbler says..... it's important to have clear in your mind what is and what is not doable. You've got to have faith in the med team, because treatment is getting more and more specialist. So try and stop worrying about that aspect (unless you have any doubts about how your boyfriend is getting treated in which case DO make a fuss ..something I had to do, BTW). But while the specialist stuff is largely out of your control, you definitely can resolve to improve/maintain your b/f's general health. As you're finding out, the MS is worsened by infections and viruses. It's also worsened by stress. Finding ways to live as healthily as you (both) possibly can will be a very strong weapon against MS in the short AND long term. So many things militate against this!! For a start, he may not feel like exercising. He may well find temporary comfort in junk food, alcohol and tobacco. He may be so stressed that he develops sleep problems.. etc etc. Can you channel your own energy and emotions into finding ways both to live the healthy life and to ENJOY it?? Start small, avoid exclusion diets and anything that looks radical. Think physical fitness, bearing in mind that you might need to try new activities that don't overtire your b/f. Also think mental state - how can he relax? Laugh? Which friends are worth cultivating.... and maybe drop a few? All things that you can get your head round without your b/f feeling that you're interfering or over-reacting. Just my thoughts xx Kay

lilbird

@lilbird

I'm new to this too & am finding trying to learn more & understand MS better as a condition is helpful but can totally understand why your boyfriend would rather have distractions. I do sometimes feel that it's all I think/talk about now. Maybe find things you can enjoy together that give him time in his day when his brain isn't stuck on "OMG I have MS- forever!!" It's good to think about anything else. Hope that's some help & you sound like a wonderful person :)

jonnydrama

@jonnydrama

You've got to (true British style) keep calm and carry on. He has to find his limits and the only way is to just do what you do. I found mine and have adjusted appropriately, I don't find it a problem it's a part of life for anyone, just we've got MS as the reason!

tigerdes

@tigerdes

I was diagnosed when I was 29 and it was a massive shock. The fact you want to be a strong support for him is a massive start :) If I can be of any help to you or him please let me know T

erinlidia

@erinlidia

I am seriously so grateful that I found this site. Thank you all! @cameron - That is definitely a goal, for both of us, to adopt a healthier lifestyle. An exercise routine that's doable. Healthy food we actually like to eat. Enjoyable and stress-reducing activities. Sleep. Social support. Such important stuff for promoting health in general. He's definitely doing the opposite right now - eating junk food, playing video games on the couch pretty much every spare second, staying up much too late, using substances to cope. I get that this is how he's dealing with it right now, so I'm trying to be patient around encouraging change. I never want to phrase it as 'you need to change this...' because both of us need to cultivate a healthy lifestyle together as a team. @lilbird - I can definitely see how it can be super unhelpful to be in the 'OMG I have MS' mindset all day, that's so stressful. I seriously wish you all the best in figuring this out and taking care of yourself too as you start on this journey, big hugs! @jonnydrama - That's a really great way to look at it. We all have to adjust our lives based on all sorts of things. I know I've had to adjust to some of my own long-lasting health challenges for sure. @tigerdes - It's good to hear from more young guys who were in their 20's at diagnosis, there's something about this time of life that can make an MS diagnosis especially hard, because it's such a big time of planning for the future. But there's also a lot of hope in getting it identified early. I hope you're doing well and thanks for your offer of support! Thanks again everyone, I am overwhelmed with your lovely responses and I appreciate being connected to this community so much. It takes a team of supporters and advocates to make this an easier ride.

lilbird

@lilbird

Hi @erinlidia Big hugs gratefully received & right back at you :D

erinlidia

@erinlidia

Thankfully he's started to open up more. He's getting curious about how the MS might affect him in the future, what adjustments he (and we) might make, and things he can do to 'protect his brain,' beyond taking the medication. It's been a little over a week since diagnosis, and it seems like he's gradually coming to terms with it. So that's a good sign :)

tigerdes

@tigerdes

That's great to hear :)

reddivine

@reddivine

COMMUNICATION is the key. Otherwise he's thinking "she pitys me2 "she's gonna leave"....and you, well you dunno what to think. In the UK best thing b/friend and i did was go to MS Life and I'd say contact MS society in Canada, meet up with others in the same situatin. Helps just to vent sometime. He WILL get frustrated, angry, miserable etc, help him to see he HAS a life and MS is not all doom and gloom. LOADS of ppl on here in 20's and 30's.........

erinlidia

@erinlidia

@reddivine Totally agree. That's why it was so hard not talking at the beginning. We're both much more open now and doing well. We got this. We're very hopeful. The first thing I told him after his diagnosis was 'I'm not going anywhere' because I know that would be his fear. I doubt he would be a support group guy - though I'm certainly all for it - but it's worth a try, or at least for him to connect online. Maybe someday. I'm continuely amazed at how many young people are affected by MS. It starts so early in so many. There are other conditions that strike even younger - I work in youth mental health, so I'm very aware of how common mental illnesses are, for example - but I really wasn't aware how much a neurological condition like MS can very much be a young person's disease. I am learning more every day and I want to keep learning.

northernlass

@northernlass

Hi @erinlidia Your BF sounds very fortunate to have you caring about him and helping him with this life changing diagnosis ( also life changing for you too ). I think it takes time to get your head around a diagnosis of MS and it is such a worry as to how MS may effect us in the future, but on saying that there is no set direction that MS will take us on and we just have to cope with what is the unknown around the corner and try and stay positive and take control of what we can when we can. I always think information is key.. but try and find a reputable source of info.. here in the UK we have MS UK and The MS Society (among a few) which are two very useful sites to visit.. (Canada must also have one or two I would hope giving more relevant info on what is available to your BF there) and of course shift MS for a bit of moral support from people who really know what it is like to face MS on a daily basis.. (either having it or helping a loved one). Best wishes to you and your BF :)

erinlidia

@erinlidia

Thanks for reaching out @Northernlass :) We have the MS Society of Canada which is the go-to place for info. Incredible to see that Canada has the highest rate of MS in the world... It is really taking time to get our heads around it. I seem to feel different emotions every day. I'm sure he's going through his own adjustment in his own way. The uncertainty is very scary. And it's extra unsettling considering that he's totally fine now, the MS is not affecting him currently. So it's like trying to adjust to something big that doesn't seem real right now.

BrianP

@BrianP

Wow, how lucky is that guy of yours to have you at his side, erinlidia, in these difficult times! Love can be powerful pillar of support, and I hope he sees how essential you will be to him going forward.

Mika

@Mika

@erinlidia wonderful how supportive you are, I can only agree with my fellow commenters :-) .... just wrote a massive comment and then saw that you wrote he's opening up now... so... okay, here's a different comment ;-) 1. - talking to much about this can put the illness too much in the foreground, and no one really likes being the centre of attention with regards to an illness no one know how it got to you in the first place 2. - MS is SOOOOOOOOO different from individual to individual. I'd say: by all means read up on it, but do not fret and overworry. He MIGHT get worse, he might NOT! who knows??? there are people who go decades without a relapse, others, like myself, have 6 in 5 months. I'd say: be sensible, plan a little for the future, be mindful things MIGHT change, but do not start buying clutches or catheters straight away ;-) Medicines are getting better and better, so there's great hope for us all :-)

northernlass

@northernlass

Hi @erinlidia Just thought I would mention what happened to me in the hope that it might give a little bit of hope that it is possible to feel normal while still having MS. When I was 26/27 I had my first ever relapse, I was in Australia and had been traveling for two and a quarter years when I got struck down with a loss of sensation in various parts of my body.. mainly hands and feet. I had no health cover so returned to the UK.. saw a neurologist who sent me for a MRI on my spine only. And then almost a year after I began to feel the symptoms (Every thing took a lot of time back then) she told me I had damaged the cushioning on my spine (!!??!!) due to a very heavy back pack. By the time she gave a vague diagnosis ( NO mention of MS..) I was starting to feel better, I had almost regained the feeling in my hands and feet and life went back to normal. I travelled some more, had two wonderful kids, and lived a normal existence just being a mum and then in Sept 2013 I started to get tingling in my left hand which eventually spread down my left side (Over a period of months) which eventually led to me getting a DX of MS in April 2014. So I just want to say that if your BF is having respite from his symptoms (I had 20 years) that is fantastic news and long may it continue.. this sounds like a great chance to just live life and be the healthiest you can be and try not to worry about the future. All the best to you both :D

erinlidia

@erinlidia

Thank you @brianp @Mika and @Northernlass :) There are clearly so many lovely people here, I'm so grateful to have found this site! I think the overall message here is to take it day by day. It's so individualized that you can't really predict anything, just adjust to things as they come, be supportive, and really embrace the moment and enjoy life and all the good times. We're definitely learning to take it day by day. Things seem to change on a daily basis. Yesterday, no symptoms - altough fatigue has been a constant in his life for years, looking back. Today, right hand numbness is back and spreading up his right arm. Things can come and go just like that I suppose. It's not impacting his life much now so all is good. Thank you all for being there and giving so much hope as we navigate the complicated world of MS.

erinlidia

@erinlidia

@orlando27 Thank you for sharing :) We're seeing now that he's had 'MS things' for years - fatigue and muscle spasms especially. Yeah, I was surprised that the diagnosis came very quickly. That seems to be happening more and more, no longer does it involve waiting for years. He got the call 2 days after the first MRI, and the next week he was in the neurologist's office with both MRIs showing lesions and inflammation, and he got diagnosed with MS and prescribed Tecfidera right away. I see a lot of people talking about Lemtrada, so I'm really wondering how that compares to Tecfidera, we'll definitely do some research. Wishing you all the best! *hugs*

erinlidia

@erinlidia

Seems like in Canada (according to MS Society of Canada) you must have tried at least 1 other DMT and not have responded well to it, before they'll try Lemtrada. I wonder if the neuro would be okay with skipping that part and going straight to it. It sounds like a great option. Just requires 5 days of infusion, then 3 days a year later and for each year after? The PML link with Tecfidera (even though just 1 person died apparently) is scary. I've heard similar things about Tysabri too. Have you started Lemtrada now? How has that been so far?

tigerdes

@tigerdes

@erinlidia on the trial I had two infusions 12 months apart. The first was 5 days the 2nd 3 days. I was doing well after the second dose but my MRI showed lesions so I had a third dose in 2013. Its been 7.5 years since my last relapse which is all down to the Lemtrada. Before that I had 4 in a year. I'd find out more about it as once you've had the treatment that's it unlike many others where it's ongoing and doesn't appear to be as effective for many. If you've got any questions feel free to drop me a PM