My partner may have MS

[champagneandff]

It looks like my partner is a couple of months away from a diagnosis of MS. Her lesions are apparently not 'typical' of MS but everything else fits. Her neurologist told her today that he's going to speak to a radiologist, with the view to starting her on DMT at the next appointment.

I have no experience of MS, and whilst she is trying her best not to let the stress get to her, she is obviously very scared about the future. All she can imagine is a future where she is unable to work and severely disabled.

It appears from what I've read online that it's not the death sentence that it once was, and that treatment has come along massively.

I'd be grateful for any positive stories that you have about having MS/having a loved one with MS. Thank you 💜

Big hugs! My partner has several lesions. He gets extreme fatigue, dizziness and leg pains. His face has numb patches too. But it's been 15 years with no new lesions and with some juggling he lives a fairly normal life.

I posted before I could add that his problems come and go but my husband feels OK more often than not. Not all ms is the really aggressive kind even if it starts out seemingly very severe. If your wife doesn't get more lesions, and sometimes people dont, they might say it is clinically isolated syndrome , but you can still access help from the MS nurse , who is wonderful.
We're a double disability household ( I've got fibromyalgia diagnosed at 19, 2 years after meeting my husband. He got his first lesion at 30. )and although it's been a struggle, and we had thought we wouldn't manage it, we've had a son at 40 and everything is great if we follow our slightly mad nap/work schedules etc, and rest when we are fatigued.

My top tip is don't struggle to live a ' normal' life, throw the rules out of the window and live to accommodate the illness and things are much easier. Do what works for you.

Also look into the importance of vitamin D and ms. I would definitely get your wife to take D3, but ask her Dr about it first. My neurosurgeon told my husband all about it years ago.

I have three friends with MS. One has a severe limp and uses crutches, that took around 10 years to develop. One has a limp that has come and gone over 20 years, one was diagnosed 2 years ago and has been without symptoms since the actual diagnosis

My lovely colleague was diagnosed around 15 years ago. Yes she does have symptoms but she's driving, working and generally still enjoying life.

I have MS, diagnosed 18months ago. Is much depends on the type and how her symtpoms are now, Everyone I know with MS is so different. I still compete in sports and work, but rest a lot and have to plan my day to allow for rest etx. I am on cladribine with is a DMT chemo drug given twice a yr. No new lesions this year! It is not what it once was for sure, but still takes a while to get used too. Good luck to your partner.

I'm so sorry to read this. Make sure she can get one of the high efficacy medications asap , if the diagnosis is made. I have MS for over 2 decades and am still working as a primary teacher. I do get tired easily and my balance is not great. If there were the DMDs that are available now, then,I'd be much better. The neuro says she sees far fewer people with obvious disability these days, due to the better drugs been available.

I have had MS for over 20 years and run marathons. I am clumsy, I drop things, I trip and fall, I get tired but I still go to the gym, run and/ or road cycle every day so can’t complain. I have RRMS and am on Kesimpta as my previous medication tecfidera wasn’t working any more. My advice would be to avoid stress as much as possible

I was taken into a room at Ipswich hospital and told to get over cervical myelopathy (1 lesion less then ms found on mri) I did not know I had 1 s and 1 t of the spine problem as well. Disgusting how I feel treated with a numb stomach.

DP was diagnosed with MS 15 years ago and has since ran 3 half marathons with the aim of one next year too. I am no expert but I think a huge thing has been the mental struggle of the possibilities of the future. That being said keeping positive is the most important thing and after many many years of stress and worry I can say that it is really important to only worry if there is something worth worrying about (this might seem a ridiculous thing to say when this huge thing is happening and very worrying). It is important for her to keep moving and exercising (this is probably a lot of mind over matter and it sounds incredibly tough when DP describes it but you can help and encourage her and this will be a huge support). Diet is another important factor - think about low fat, limit or eliminate gluten, lactose or dairy free (all of these will help but won't be a miracle for wellness). Get to know when it is important to rest and when it is important to push through and keep going. It's a journey and there are no real answers just one step at a time. Try very hard to think positively and find positives even in the dark thoughts. My DP lives a very full and rich life and is completely mobile. He works full time, we have young kids, he runs about x2 10k a week, life as normal can be possible and MS is not sentence. I'm thinking of you guys, it's not easy. Reach out any time x

And agree with reducing stress as much as possible! This is so important!

I was diagnosed with RRMS in 2017.

I had quite an intensive therapy in 2019 which unfortunately brought on other things but has forced my MS to a grinding halt. It's been 5 years now. MRIs completely stable and I'm incredibly lucky that I forget I have it most of the time.

The MS treatment did unfortunately cause me to develop AOSD which has been pretty horrific in its uncontrolled state. Now controlled I lead a very normal life.

Thank you so much to everyone who's replied!

At the moment she is functioning v well, I believe. She sleeps a lot (also has a demanding job that I think would wear anyone out), and has a mild tremor/stammer that comes out when she's tired. Hopefully, if she starts a treatment soon, it should reduce the chances of further attacks.

The issue is that it's a new relationship, and I am 9 years younger than her. She's concerned that I don't know what I'm getting myself into, and that I should just leave now and find someone healthy.

Obviously, I don't know anything about MS. I don't know what it's like to be with someone who is chronically ill. But I have thought about this a lot. My attitude in life is 'we'll worry about that when/if it happens' and I don't want to end a promising relationship over a lot of maybes, when she could end up leading a fairly normal life.

She treats me well. She cares a lot for me. She's romantic and funny and I respect her a lot. I see the potential of having a very fulfilling, long term relationship with her.

She knows that I've started this thread and wants me to ask partners of people with MS how they take care of themselves within the relationship? What should I expect and what will be the impact on me?

I have ms and have met my parter in our ms support group. We therefore understand each other. Look to see if ms society have a local group that you can attend. A lot of partners often attend these things as it helps.