I have multiple sclerosis- ask me anything

[msmummy20]

34 years old, early stages.

What type of MS do you have x

It's relapsing remitting

How/when did you find out?

Hello fellow Ms mummy! Im 36 and rrms too, diagnosed last year. How old your little one/s?

I found out around 3-4 years ago. I had a few bouts of numb patches on my skin and didn't think much of it. It came and went a few times every few months.

Then one day my eye started hurting and I started to have a strange glare on it. I went to the optician who said to go to the eye hospital. They said it was probably an inflamed optic nerve.. the next day I woke up and couldn't see properly, it was black. Then I had some scans and they saw lots of patches of inflammation in my brain and spinal chord and that's when they diagnosed it.

Hi @RedCouch ! Nice to meet you ! My DD is 11 months ! What about yours ?

Do you have any trauma in your background?

Any experience of not feeling safe to express how you feel / have boundaries / say no?

(Sorry, sounds random but some think there could be a link between trauma and relapsing remitting MS)

Aww lovely :) my little one is 3 and a half. She's a good distraction lol

@umpteennamechanges ooh that's very interesting! Is this Gabor Mate you're referring to ? Or do you have any other reference ?

I've recently been looking into that exact topic !

I mean, don't we all have trauma ? I think definitely the boundaries thing and the saying no thing is HUGE in my life and always has been. As in, boundaries are difficult and so is saying no. So much so that mo matter who I talk to, I can't ever end the conversation first. I mean I do sometimes, but I feel bad. I always wait for the other person to finish.

I'm sorry I don't know much about ms. How does it affect your day to day life? Do you have supportive family??

@RedCouch aw sweet age ! Did you have a relapse after she was born or within her first year ?

@lyinginthegutterstaringatstars day to day so far isn't too bad right now. I get pretty fatigued. I can't do lots and lots of things. I get to breaking point when I'm exhausted and have to crash. I have strange sensations in my body, like pins and needles or electric shock sensations in my feet sometimes. But I'm still fully mobile and able to do everything. I have the first stage of it. After 15-20 years, it becomes progressive in a lot of cases ( not in everyone, but the majority ) and then you can have difficulties walking and moving around.

Same

For the other poster. No trauma. Though I have had Glandular Fever.

I've got it too. Four years since diagnosis.

I didn't have MS at all, it came on when she was 1. I had a pretty traumatic birth with her though, and then first year was tough so could have been a factor/trigger? Who knows

How about you?

Hey OP! My DH has MS - when he was diagnosed it was classified as "benign"- I don't think that is used any more and it is the R&RM category. For over 25 years he's had minimal symptoms - a slight headache every now and then. Then a couple of days ago he's had a much bigger attack - one of his legs was affected and he was walking with a limp. That seems to have eased now - but he's been re-referred to hospital (not been there for MS in the last 25 years). We're experiencing a lot of stress at the moment and think this has precipitated the most recent attack - do you notice any fluctuation with regard to stress?

@PastMyBestBeforeDate ah a club no one wants to be part of. But can't change it.. I hope you're doing ok.

@RedCouch ah ok I see. It's very common for it to flare up after having a baby and lots of people get their first symptoms around that time. Mine started way before I had a baby but definitely playing up a bit now after I've had her. It's been such a hard year though for everyone hasn't it. The worry has been overwhelming and I do think that stress plays into it. So I'm not surprised.

@myrtleWilson oh dear. Sounds terrible for your DH. This is quite common - it bubbles under the surface for ages and then hits you. It sucks ! I wish you all the. Wag.

Did the sight come back in your eye OP?

[quote msmummy20]@umpteennamechanges ooh that's very interesting! Is this Gabor Mate you're referring to ? Or do you have any other reference ?

I've recently been looking into that exact topic !

I mean, don't we all have trauma ? I think definitely the boundaries thing and the saying no thing is HUGE in my life and always has been. As in, boundaries are difficult and so is saying no. So much so that mo matter who I talk to, I can't ever end the conversation first. I mean I do sometimes, but I feel bad. I always wait for the other person to finish. [/quote]

I think it was Gabor Mate as I'm reading his book at the moment but am also reading 'The Body Keeps The Score' so could have been in there too? Not sure!

I think it's interesting that there could be a link between trauma / chronic stress and autoimmune type illnesses.

I used to think everyone had trauma but then realised that that's just because I come from a dysfunctional family (so all have trauma).

I'd say out of my 10 closest friends only one other has any childhood/young adult trauma (others have adult trauma to varying degrees but nothing more serious/unusual than parental bereavement)

My DH has MS, he is on Fingolimod for relapsing remitting MS which was diagnosed in 2010. He's not had a relapse since starting this drug. He does get very tired from time to time.

My Uncle was diagnosed with relaxing remitting about 20 years ago.

He's still in very good shape and hasn't had any major relapses but has suffered with fatigue and some pain.

He's been receiving some kind of new treatment as part of a trial which he says has been game changing.

I can't remember what it is though...

Another MS’er here! Just over 20 years for me (I was diagnosed at 20). My 2DC are late teens. Still RRMS but I’ve had a stick/occasional wheelchair for about 17 of those.

Have you found it’s impacted your friendships much? Are you on any disease modifying drugs?

(Name change as MS with my normal posting history would probably be outing!)

Possibly stem cell treatment?

What treatments are you on? Are you trying hyperbaric oxygen?

Wish you all the luck with it not progressing.