I am in a relationship with someone who has MS. Our relationship is new and after a few weeks he told me he has MS. I went home and cried because it isn't fair that someone so young and so amazing with his whole life ahead of him got this diagnosis. I stayed with him, there wasn't another option for me, we hit it off so well. It's like I found my soulmate in him. I have worked with people diagnosed with MS in my past job and I've seen the good and the hard times. I've researched and educated myself and we talk a lot. He was diagnosied at 36, 3 years ago. He wasn't honest about the number of lesions at first or the symptoms he's facing which I understand because we were new and he was scared. The symptoms are becoming more prevalent, mobility issues and falling, numbness in his left side and he said he feels a cognitive decline, forgetting things he should know and doing things he should know. I am helping him with his young son and am a supportive and caring partner.
His mood swings are becoming bad, saying hurtful things to me. I'm trying to be understanding that he doesn't mean what he says and he's just under stress and anxious.
Wanting some advice on how to navigate this and stay strong and pull through. He really means a lot to me.
He's starting Mavenclad in the next month so I hope that helps. He's tried treatment once in the past but gave up and has been against treatment since but wanting to try again.
All help and advice is appreciated.
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Welcome! What's he's going through is infuriating, but a good therapist will give him the tools he is lacking to handle his stress and anxiety in a healthier manner.
Mavenclad can be a different kind of infuriating 😵💫 but there's no way to predict who will end up with side effects or not. I embraced becoming a potato while trusting the process, and it's been amazing! Cognition was the first thing to improve for me, and I hope he feels this benefit also.
It's hard to determine but try to separate what is Ms linked and what is from his past life before he met you. mood swings aren't necessarily Ms but they can be at times. a good thing to do would be to call the different Ms organizations like msaa which is under mymsaa and the national Multiple Sclerosis Society and get yourself set up for some counseling cuz they can help you understand what's going on and how to cope
Just worth making sure that your partner does not have other factors exacerbating the neurological, cognitive and mood symptoms such as a vit B12 deficiency. There are believed to be links anyway, neurosciencenews.com/multip... and low B12 (either obvious in serum or less easy to spot cellular deficiency) is common and often missed. It is essential for nerve health and function so can be useful even in those without apparent deficiency (about 25% of those who benefit have all tests normal, as we don't have good testing and metabolism is not yet fully understood ). This stress will deplete your own nutrients as well as his. Try gently introducing some magnesium for you both - essential for so much, and great for stress. Best wishes
Love and patience my friend! You have proven your commitment and understanding; which is truly a blessing! I know if he would be open to connecting with a MS support; and partners can attend? Share your thoughts and feelings to and share your feelings during the times he’s transferring emotions onto you. Sometimes that’s what happens when a loved one is scared, frustrated and angry because things aren’t the same and (we) can’t control it! Don’t know your spiritual connections, but it does help! Be encouraged, you’re truly wonderful! Blessings- NeeC
Hello. Keep in mind there is likely more going on with his cognitive impairment than is realized. Saying hurtful things may not be something he can control. His thought patterns (may have) changed. It now (may) make sense to him to say such things and behave in such a way. Its possible his behaviors are a symptom, not much different than the numbness and tingling and certainly possible he is unable to prevent this type symptom without medical intervention.
I'm sorry you and your partner are going through this. There have been a number of spouses/partners on this forum with the same complaint. My late husband had cancer for a long time, and as he got sicker, he was the same way. While I'm sympathetic to the horror of facing disability and possibly an early death, I don't enjoy bearing the brunt of anyone's anger. I wasn't able to get it through my head that it wasn't about me, and I also struggled to stand up for myself. Therapy and antidepressants/anxiety meds for both of you ( if necessary) are great, but I think if he verbally abuses you, you should tell him you're not his @#$% verbal punching bag and demand that he apologize. Let him know it's not acceptable right now and hopefully nip it in the bud.
As an MS patient myself, I struggle with anger as well. If I lose my cool, I do what civil people do, which is to say I'm sorry and talk about what I would like for us to handle differently. But MS hasn't changed my basic personality. I am still kind to my husband and express appreciation for everything he does.
Please know that we as a community are here for you if you need a laugh, need advice, or just need to vent like crazy. This is a really warm, supportive group of people, and I'm glad you found us. ❤️
Edited to add that a professional therapist might tell you to say the same thing, but in a much more pleasant way. Preferably starting with the words "I feel...". 😊
“ I feel” like you hit the nail on the head with that piece of advice CatsandCars! The only other thing I’m wondering, is if her beloved could try to engage in some kind of exercise that would help diffuse some of the stress. Sometimes my family and friends that definitely have my best interested heart can make me feel a little bit claustrophobic when things start going wonky with my MS.. and sometimes the only thing that helps clear my head is to spend some time in the water and focus my energy on a class where I feel enabled-NOT DISABLED! What is the price of that feeling?!
apologies for what you and your partner are going through, it sucks. Talk it through, explain to him your feelings too. I’ve learned that it doesn’t matter what someone else is going through, that your feeling and concerns are just as important. No one person should be allowed to look down or mistreat people for whatever they are going through, no excuses. Those are my two cents.. communication, trust, honesty, respect, etc. are pillars to a healthy relationship. It sounds like to me, he needs to accept that he has MS, and symptoms are what they are. Life isn’t going to be the same no more, that doesn’t mean he can’t find beauty in the life he has now. Perspective is difficult at times to see, he might just be focused on the wrong things. Hopefully he can learn to focus on what’s important and let go of what isn’t.. he has a beautiful child, a beautiful woman and a life worth living for. It might not be the way he envisioned, but amazing it is, non the less.
*** Hope this isn’t taken the wrong way, just advice.***
Hi, Haku949. Good to see you! I'm praying that your son will do well with MS since he's been able to get high efficacy meds from the beginning. And I understand your concern, but love is an incredible force. ♥️
Met with the neuro- he said that there is one lesion on the frontal lobe he will need a close watch. I am hoping Ocrevis helps. I hope you are doing well !
It sounds scary, but it's really good that the neuro is keeping an eye on it. There aren't enough neurologists to go around, so it's good to have one who is proactive. I hope the Ocrevus helps, too
Whoa! He needs to watch his mouth and not abuse you! Verbal abuse is still abuse. You do have to let him know that you care, very much, but for him to speak like that to you is not acceptable. Make sure he's got it before you make any closer steps.
I admire your desire to make this relationship work. However, you have not known this man very long it sounds like. Do you have any idea what he has been like in the past with his emotions? I would talk with his friends and family to get a sense of how he has changed since having MS. Perhaps he has always been an angry person and is using the disease as an excuse. I’m just playing with another side of the discussion. If you were my daughter, I would say this to her! Best of luck and please keep us posted. ❤️
When my husband and I met, I only had a CIS diagnosis. I told him as such, and when I got a letter confirming that I have RRMS, I explained the different types of MS. He has stayed with me for 9 years so far, through my dangerous symptoms. He has been to hell and back with me. He even married me last year, joking that he's doing one of his vows already 🤣 sometimes, you need someone there in your corner, fighting the MonSter with you.I think that you should tell him how you feel, get some conversation going, sit down with a brew and biscuits if needs be ❤️🫂 I hope you find all that you're looking for, and I'm sending a reassuring hug your way 🫂
Thank you for all the responses. Each one gives me another grateful perspective.
This specific issue I have come to learn that it is not a symptom of MS. Just his typical behaviour he has always had, which he has acknowledged and is working on, I'm sure all the stress doesnt help at all and there is a lot on his plate right now. With research on MS and the possible symptoms I made the excuse for him that it must be due to MS and not his normal behaviour. He's used to being the boss, dictating and assertive, not the desired behaviour in a respectful relationship, especially a new one. He appreciates what he has and is looking at things a bit differently now and trying to do better. Thank you for all your advice and suggestions. Communication is definitely the key in any relationship.
As for a comment from someone who was interested in someone deciding to be in a relationship with someone who discloses they have MS.
For myself it wasn't an issue, I was somewhat educated due to a past job and my grandmother, although when you get into a relationship with someone with MS, you do a deep dive into absolutely everything you can find online, helpful or not.
It scares me, I'm 38 years old and I don't know what the future holds and how being in a relationship with this man will change my life. I have a lot of fears. I was too scared to talk to him about my feelings at first cause I didnt want him to hurt either and some I still keep to myself to not worry him. When he falls down the stairs or can't find things sitting right in front of him, when he has a lung infection and is sick, but as much as it scares me I am sure it scares him more. I want to be in his corner, fighting along with him and giving him unconditional support that he deserves. That being said I also know I deserve a good relationship and solid foundation that will help carry us through this. I have supportive friends who are there for me with their advice even when it's not what I want to hear and I am discovering a world of support through these forums, for that I am grateful.
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