Last reply 3 weeks ago
Anyone with Benign MS?

Hi everyone

I’d like to connect with others who have been diagnosed with benign MS?

I am wondering how it affects you and what your quality of life is like ?

My MS started 19 years ago when I was in my early 20’s. I had optic neuritis. My relapses have always been eyes throughout the years. I’ve had one serious episode in each eye about eleven years apart and in-between some flares. Thankfully I recovered vision from episodes although I get utthoffs this time of year when my body overheats mainly when I’m exercising.

My symptoms otherwise are fatigue, pain at times , low mood, slower thinking and poorer concentration and memory.

I have found my neurologist tough to deal with a few times over the years as he was wuick to dish out antidepressants and is kinda old school. I am thinking for ages of changing to another neuro who I’ve heard has better communication and has more modern approach. There has been numerous times I’ve felt shit in my neurologists appointments because of things he’s said that make me feel I should be dealing with my MS better. He has improved his approach slightly over the years. I have taken a few years out from him at points and just dealth with the ms myself even.

I just wonder how any of you with benign MS are doing ? How it affects you and whether you find your MS helpful. Do you work in a paid work role. I have been a stay at home parent since having kids bit my kids are teens now so thinking if I can at all train up and do some paid work I’d like it or I’ll go cracked when my kids have left home.

With all the MS symtpoms over the years I have lost friends due to being tired and having to prioritise my health after housework, kids etc. I also have had some crazy negative family and inlaw experiences that have turned me off putting effort into new relationships with friendships. I know my quality of life isn’t ideal with my work outside home and no close friends . Outside my husband I haven’t got anyone I’m really close to. I know it’s not healthy. I’m starting some volunteer work locally that will help mentally .

So that’s a bit about me. Would love to know what it’s like for any of you with benign MS.

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stumbler
3 weeks ago

Hi @mnjy . Wow, so you have benign MS, which has given you those problems over the years. It’s a good job it’s not active MS! And that’s the reason I don’t go along with a diagnosis of benign. It’s either MS or it isn’t! 🤔

It does sound like you need a “better” Neurologist, because the thinking behind effectively managing MS has moved forwards in leaps and bounds.

Having MS can be isolating. As isolating as we allow it. But, volunteer work will get you out, you’ll enjoy social interaction and find it very rewarding. So, go for it.


highlander
3 weeks ago

@mnjy
The only thing that is benign in your life is your Neuro!
Unbelievable, truly unbelievable!


look
3 weeks ago

Hi !
I’m in a similarplace as you in terms of kids growing up (eldest away at Uni and the other two are 11 and 16). I’ve had ms for going on 22 years and over the last 6 years have been doing volunteering for the Riding for the Disabled. I have met so many people, disabled kids, parents, carers, teachers and of course fellow volunteers who all enjoy just getting out there. I can highly recommend doing any volunteer work but particularly RDA and there are lots of volunteers who are not at all horsey but still go along and help. Sorry, I sound like an advert but I have found it really great and a great source of friendship too. I didn’t see where you’re based but RDa is UK based. I now find it a challenge to do certain things, like run alongside a pony holding onto a diasabled child, but was given a different role to enable me to keep helping. Good luck and hope that helps a bit with ideas..
Loo – K


karen_turnock
3 weeks ago

I’m also labelled Benign which i presume is why i haven’t seen a neurologist for years, I have continuing ‘numb’ toes, discomfort in my legs every evening and fatigue that although I still work part time means I hibernate in the evenings, which is difficult because I live alone, for several years now I’ve been suffering from abdominal pain, many tests, undiagnosed but am thinking may be gastroparesis, time i demanded to see a neurologist I think 🤔

I was also told my MS was benign when I was diagnosed 15 years ago. In the past 20 years I have had 2 very clear relapses both involving numbness (first was half of my face, second the left half of my body particularly my leg). Over the past few years I have been more aware of weakness and muscle fatigue in my left arm and hand, restless leg-type feelings, the ‘MS hug’ and some problems with stiffness and pain in my legs and feet which may or may not be MS related.

To be honest it’s feeling less and less ‘benign’ to me and I’ve been wondering lately if I should get some help (I have avoided neurologists and MS nurses up to now due to issues in accepting there is anything wrong with me).

In the rest of my life I have 2 daughters aged 10 and 12 and work 3 days a week in the NHS


mnjy
3 weeks ago

Hi everyone. Thanks so much for replies and really nice to touch base with others in similar situation.
A benign diagnosis seems so strange alright. I have nearly changed neuro a few times but I changed mind then as limited choice and it’s a bit of hard work as it’s like starting from scratch in some ways. I’m in Ireland by the way. This neuro I’m thinking of changing to is other younger and because it’s female it’s a another plus for me as I feel I’ll connect better especially when I reach menopausal years too it might be more helpful , if that makes sense.
I know I’m lucky with no permanent disability but life is far from easy with benign MS.
I’ve done volunteer work on and off the last many years but took time out since last autumn to help a relative going through cancer treatment.
I’m currently upskilling a little bit on a free website. I’ve looked into all avenues to upskill but there is nothing for me local or online that won’t cost money and my husband thinks I should just get a part time job if I want work. I find it so hard to stick to routine plus care of my daughter lots mostly in my hands. She is 14 though and a good teen thankfully so I’m just needed for meals and taxiing to places. Bit of course there is laundry , housework etc and I’m also her counsellor / emotional supporter if she has a bad day. She’s a great kid really but just trying explain where energy goes which I’m sure ye all know and trying to do my best with personal development . I start back volunteering this Saturday. It’s a local charity I’m happy to help and was involved with before. I agree as some of you said that the social outlet is so important. I am going queer from lack of it at times. I find MS really isolating and longer it goes on the more I lack more confidence. But I’ll keep at it as it’s important.


dominics
3 weeks ago

FWIW, To echo others here. The modern thinking is that there is no such thing and benign MS> The remitting part of relapsing-remitting merely points to no observable symptoms. C. 50% (the smouldering bit) is considered hidden from obvious signs on diagnosis criteria.

Wowee, you owe it to yourself to get a better neuro. You also owe it to yourself (the slight finger-wagging bit I’m afraid) to stay current. The Barts MS site is a good place to start for no-nonsense intelligent discussion.

This forum is probably the best place to discuss non-clinical but still MS stuff. We all empathise with one-another, share experiences etc. For the clinical stuff, see a decent neuro. The Irish MS community must know who is good and who isn’t.

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