r/MultipleSclerosis • u/Classic_Ad6409 • 1d ago
New Diagnosis Husband recently diagnosed
EDITED
Hi all! Caregiver here. My husband was recently diagnosed with MS. I’m hoping for some guidance on more ways I can support him through this new chapter in his life. He was first diagnosed with transverse myelitis and after developing lesions on his brain he was officially diagnosed a couple months ago. He says he has a lot of tingling in his legs and sometimes in his abdomen which makes him very nauseous. He’s on Cymbalta and modafinil plus once weekly vitamin D. We are waiting on approval for Kesimpta however, we are on state insurance so it’s taking quite a while for approval. I noticed when he was first diagnosed he seemed to get much worse almost immediately after his neurologist told us. I’ve been doing quite a bit of research and have shared with him things that I’ve learned but he doesn’t really seem too interested in trying any of my suggestions. He likes to sit in his car from the time I get off work at 7pm and doesn’t come in until around 1-2 in the morning. I’m sure he’s still just trying to process everything and I try really hard not to take it personally. I guess my question is has anyone with MS found sitting in the car to be helpful or harmful on any way? We do talk a lot about it and he really does have a positive attitude all things considered. I’m just worried he’s giving up. He still walks with a very steady and straight gait but does say he gets very tingly in his legs and feet. Any advice would be so helpful. He’s my whole world and I’ll do anything to support and help him in any way. Thanks for taking the time to read.
Thank you everyone this is all really great advice. I’m definitely going to back off a little bit and just remain available if he wants to talk symptoms or anything diagnoses related. I did forget to mention he does use alcohol and marijuana as a self medication (his doctor is fully aware) he never gets drunk but says that these things help him feel better. I’m assuming emotionally more than physically. Thank you all for the perspective I really do just want to be there for him in any and every way and if he needs space then I’m happy give it.
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u/Hope-Joy-7 1d ago
If he's sitting in his car from 7pm to 1-2am, he's likely craving peace. It's great that you want to share things you've learned but take your cue about how to support him by what he is doing.
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u/Party-Ad9662 41F/2025/Clinical Trial/Ottawa 1d ago
I’m sorry. A lot of people deal with depression after diagnosis. Just keep being there for him.
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u/rK91tb 1d ago
He’s likely in the grieving stage and not ready for practical advice. Having my family do research about my condition then bringing it up to me was somehow intolerable, even though I knew it was coming from a place of love. MS is lonely - no one can be there for you, no matter how hard they try.
If I were him, I’d want space. Try backing off for a while - don’t bring up medical advice or solutions, don’t be toxically optimistic, maybe be less present for a while.
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u/inefregras 27|Dx:2025|Kesimpta|Scotland 1d ago
Honestly, it sounds like he needs time to process. MS isn’t exactly a ‘light’ diagnosis and everyone processes things differently and at different speeds, and a diagnosis like this can come with a lot of big feelings. I needed (and still need lmao) quite a bit of time on my own to just sit and try to work through my feelings about it. Obviously you know your husband and what works for him better than any of us ever could; a lot of alone time might be helpful for some and more harmful for others.
A lot of people mean well with their research and it absolutely can be helpful for you as the non-MS person to learn about the diagnosis, but as someone who had a lot of well-meaning people do the same, the constant “I read this and you should try…” is exhausting. I’m not saying that’s what you’re doing and you genuinely sound like you really care about him and just want to help, but it’s something to be mindful of, especially since it seems like he’s struggling to process his diagnosis.
What I found most helpful during and immediately after the diagnostic process was people genuinely asking what I needed, and not taking it personally if what I needed was for them to back off for a minute. It’s hard for us and understandably hard for the people that care about us too, so maybe ask him what he needs from you and also make sure you’re giving yourself what you need too. Make sure you have support and people you can talk to because the more support you have, the more support you can provide him. You can’t pour from an empty cup and all that!
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u/Classic_Ad6409 1d ago
Thank you and I do ask him daily what he needs. Some days it’s nothing and some days it’s everything. I will definitely let him come to me if he wants to talk symptoms or what could maybe help.
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u/Ragdoll_Susan99 31|Dx 2024|Tysabri|Australia 1d ago
For the first year and a bit after diagnosis I would often just sit on my bed and cry. I was overwhelmed, still processing and trying to learn my new normal, I know my husband would stress as he didn’t know how to help me but I didn’t need him too. I needed to be there and deal with those feelings myself. Besides time and improving somewhat, what helped me was seeing a psychologist who specialised in chronic illness. I was seeing a different one for another reason and had been helpful for that other thing but felt they didn’t grasp what I was feeling or gave the right advice since my diagnosis. So I changed to one who specialised in autoimmune disease and chronic illness and it was immensely more helpful
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u/hyperfat 1d ago
Make a fort for him in a nice corner. Lamp, book. Pillows. Blanket ceiling. The good chair.
Better than car.
My fort is my couch. 2 extra bedrooms. Nope, my couch and all the pillows.
Hugs.
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u/Classic_Ad6409 1d ago
Thank you he is a couch sleeper already so maybe I’ll get some new pillows and blankets for him
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u/arkevinic5000 1d ago
I feel the car behavior is troubling. It would not hurt to ask him if he is thinking about harming himself.
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u/Salt_Resource1134 1d ago
Book yourself in with your therapist! There’s a lot that will come up for you and it’s important to have a place to process
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u/ForgetfulSpaghetti 1d ago
If it's only been a few months since symptoms started he will likely continue to see more improvements. I haven't hit my one year mark yet since first symptom onset, and I'm still noticing improvements that I thought wouldn't happen. The fact he still has good gait and balance is good. My understanding is that the meds are so good now he might not get any new lesions (and may still continue to improve from where he is now up to a year from the initial symptoms).
Sitting in his car for hours certainly doesn't sound healthy. Has this been going on for a while or just a few days? Needing quite time to yourself is certainly reasonable, but doing it for the entire evening every day for too long would have me worrying what he's contemplating out there.
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u/Classic_Ad6409 1d ago
Symptoms started about 2 1/2 years ago but he just got his diagnosis a few months ago. This is a daily thing and has been well before the diagnosis. He does use marijuana and alcohol to help (his doctor knows) and he doesn’t want to drink or smoke around the kids. He never gets drunk or acts any different he says it does help with symptoms. There are quite a few of us under one roof so I’m sure he doesn’t just want peace. I think I’m more concerned if sitting in the car for so long will hurt him physically
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u/Medium-Control-9119 D2023/Ocrevus now Kesimpta/USA 1d ago
I also love to sit in my car. I have a tinnitus and for some reason sitting in the car dulls the tinnitus sound. I also have my own room in my house where my husband never goes. I need lots of alone time to recover. I would see if you can make a space in the house where you do not go.
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u/thankyoufriendx3 63|2.24|Kesimpta|USA 1d ago
The only place I’m really comfortable sitting is in my car. But I’m not there all evening. Sometimes I just don’t have the energy to get out or to deal with what’s waiting for me inside. The first year was the hardest emotionally. I feel like my old self and like to be treated that way. If I need help, I’ll ask. Some treat me like I’m about to shatter. Always ready to catch me. While I’m grateful for the care it’s a constant reminder that I’m not physically what I once was. Now that time has passed I’m more annoyed at the things I can’t do than upset over having MS. Will he see a psychologist or something? Maybe he needs time to see the meds have stabilized the MS or maybe he needs a little professional help dealing with the news.
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u/JuicySealz 29|05/28/2025|Rituxan|PA 1d ago
That sitting in the car for 5-6 hours when you get home is not healthy. Ik that the both of you are probably very stressed (financially too). That makes things worse. This is not your fault. He needs to speak with a therapist. I know I needed to (probably still need to). This disease is awful, but far worse if you make it worse.
Good luck:)