I have multiple sclerosis- ask me anything

[msmummy20]

34 years old, early stages.

I have RRMS too op, hence why I asked, I've been diagnosed about 13yrs, same symptoms as you led to diagnosis.
Optic neuritus is when its pretty much nailed on to be MS, I've had 3 bouts where I lost vision totally in one eye.

Ive not heard of the trauma link, I do know my symptoms have hugely improved since leaving a domestically abusive relationship, the amount of stress I was under was immense.
In the year after I left when he was at his worst I had 3 relapses.

@Newernewist oh that's awful. It's really scary isn't it. I've only had it once but I worry it will happen again.

I'm on tecfidera at the moment but haven't been on it for long.

@msby 20 years wow ! Warrior !

I have been on and off tecfidera and copaxone at one point. I had a baby this year so wasn't on anything when we were trying and when I was pregnant and then for quite a while after as I was trying and failing badly to breast feed and then the lockdown happened which meant I didn't get my medication until a few weeks ago.

How you finding tecfidera, I couldnt Corp with the reaction at the injection site.

It's OK! I just get the hot flash but otherwise I'm ok. Yeah I hated doing injections, it's just to for me !

What are your symptoms when it’s flaring badly? Do you have days where you feel completely fine or are there always minor symptoms each day?

@Caramel81 when I'm having a relapse it's tingling and electric shock sensations in my legs and feet mostly. I've had a weird sensation in my foot for about 3 months now. It feels like an eclectic current when I walk or touch a certain part of my foot. I have that every day now. But it's minor and I can live with it. Most days I have something like that or tingling in my upper back that just doesn't shift.

It's been a long time since I've had absolutely nothing. But what I have now is still really really minor. I get bad headaches a lot and feel very tired a lot too. But all in all, I'm OK now. If it always stayed just like this, I would be very happy.

@Caramel81 when this last flare started, it was just my foot that was weird. Then for around 3 weeks there were odd sensations all over my legs. One of my legs was so annoying, it was as if your trousers are rubbing on your shin ever so slightly, but I wasn't wearing trousers.. then that all stopped, but I'm left with the weird feeling in my foot for ages now. I kind of think it won't go away. In the summer I had just this constant tingling in my upper back for a few weeks. That has come and gone a few times over the last couple of years. I've never had any mobility issues. I can do everything and exercise etc etc. Just like before. Except I'm just generally more tired.

Are you entitled to disability benefits? Does it run in your family at all? Does a bad relapse come out of the blue or can you feel signs that it’s coming a few days before such as being extra fatigued? Very interesting thread!

@Caramel81 no I don't think I'm entitled to anything. I've never looked into it to be honest. I work full time in a corporate job. It doesn't run in my family as such, but my first cousin does have it. Not sure if there is a link there.

I feel like I get extra fatigued before something happens. I feel travel sick for a few days before. By travel sick I mean nausea and a headache and pressure in my head.

I don't think I've ever had a bad relapse though. The thing with my eye was the worst thing that's happened. That was 3 years ago now. I was very very stressed leading up to that and very unhappy in my job. It was the kind of job that just makes you cry every day. I had a very demeaning boss who just didn't support me and wanted me to quit, so she made sure to make me feel very bad about myself, no matter how hard I tried. It was also a job I had wanted for a really long time within the company, so leaving it would have been very humiliating publicly. Kind of like when you finally get a promotion but you just can't do it. I felt quite ashamed. That's when it got very bad and my eye thing happened. I definitely think it's linked.

Hi @msmummy20. Sort of OK :) thanks. I'm struggling to walk at the moment and it's been active this year so they're changing my DMD and I'm keeping my fingers crossed it hasn't become SPMS.
Wet trauma, yes I had a significant physical event some years ago and I wonder if that was a trigger but I also had glandular fever as a teenager.

@PastMyBestBeforeDate I'm sorry you're having problems. This year has been very hard, perhaps the stress of it doesn't help.

How long did it take for you to develop mobility issues ? I hope you get on another DMD that helps. Do you also take vitamin D ? I take a lot and I think it does help. There's a link with deficiency and MS. I also think there are some dmds for progressive MS, so even if you've crossed over - there's still something you could try.

@msmummy20 this is my first real flare since diagnosis but it's sort of crept up on me. I was on the old side for diagnosis but I think I can spot some flares that happened years earlier when I look back. I do take vitamin D. I actually found this year OK. I was quite relieved not to be having to go out and about while I was struggling!
Some of the options I have now for DMDs are licensed for SPMS so it is a case of staying positive. Fortunately my work doesn't need me to be mobile and DH and my DC are lovely :) I am lucky.

@PastMyBestBeforeDate ah OK I see ! So how long do you think you've had it? Great to hear you have supportive family. Having children and MS is definitely challenging. I just want to rest today. I've been so exhausted since the moment I got up. But it's tough with a little one.

Have you had steroids for this last flare ? It sounds quite bad if it's affecting your ability to walk.

@msmummy20 oh yes coping with little DC is hard at the best of times let alone with a chronic illness. I hope you get a chance to have a rest today. My DC are still in school but I don't have to run around after them anymore!
No steroids. I probably should have had them but it hasn't happened.
I had a weird burning patch about 10 years ago that was diagnosed as shingles but never came out in spots. I now think that was MS. Even further back I've had months at a time where I have been swimming through a fog of exhaustion for no obvious reason. I wonder now about that too.

Hi, I also have MS, I was diagnosed after getting optic neuritis 3 months after a really traumatic C section... im now pregnant again and am soo scared of another relapse! The thought of it turning into progressive MS in 10/15 years means I'll be in my 30's and im worried sick that I wont be mobile or I won't be able to be the best mom to my babies :(

I take tecfidera and it’s fine. I get a bit of flushing from time to time, especially if I don’t eat the best things when I take it! I did take an interferon previously, but I had really bad reactions to the drug and didn’t like the injections.

Mine was definitely caused by having glandular fever when I was 20. I’ve definitely had it 18 years now as it showed up in a scan then, although only been diagnosed 5.

I have hyperbaric oxygen treatment once a week.

I still exercise for a couple of hours every day, cycle, run, so cross fit so it doesn’t have to be a life sentence. I find emotional stress the biggest trigger so try to stay calm. Day to day no one would know I have anything.

Regarding the benign ms - I was told they can only say it’s benign ms in the past - Ie no one knows what’ll happen tomorrow. So I could say my MS is benign to date but I might not be able to say that next week!

I have RRMS and do everything I can to keep it that way. No stress, lots of exercise, eat well, only drink water and look after myself.