I have a question to more ‘experienced’ members. I find it difficult to believe I will become very ill in the future. It’s a very difficult thing to explain. I was diagnosed in 2017 and have had symptoms since 2016. I’ve so far just had numbness and tingling and optic neuritis. Then nothing since optic neuritis in early 2017. Initially I took it all quite seriously and even got onto a DMD, then marriage and baby happened so now I’m off any DMD. I had a scan in 2018 and there was no procession at all, in fact some lesions showed signs of ‘healing’ according to the doctor.
I had a scan recently which showed some more activity is happening and I’ve been experiencing tingling, so on and off this year- so I guess it makes sense and was to be expected. I just find it hard to believe that I’m ‘sick’ sometimes or that I might end up having big problems. I go between just thinking it’s impossible that will happen as I feel fine now, to being terrified that it will happen. I kind of write it off as a very mild case. I also feel like everyone around me does the same. Sometimes when I’m in one of my moods of taking it seriously, people just tell me ’ You’ll be fine ’ ’ think positive ’ ’ you won’t end up with a cane '… they make me feel like I’m being dramatic. Or sometimes when I mention I have weird skin sensations and tingling, people just tell me they have that too and that it’s nothing. When I mentioned it to my doc, he said it’s probably my spinal lesion.
I don’t really know what I’m trying to say, I just wanted to know if anyone else felt like a fraud about this MS situation ? I also have a super super stressful life. Sometimes I think I should relax and reduce stress also for my MS issue. But it’s so minor right now, I feel like a fraud.
I feel this sometimes. Been diagnosed 16 years now and you wouldn’t know I’m ill looking at me… just the other day I wondered if this was actually all true…then i see my lesions on MRI… It’s between feeling like nothing can happen to feeling scared ify what might come. I know what you mean. Katy
MS is a weird condition, I’ve been diagnosed for nearly 14yrs, went straight in at SPMS, so all the time I am progressing and yes getting worse. No 2 people are the same with this condition, yes we might have similarties, but we won’t follow the same road. Who knows how you might end up, you could do ok, you could get a lot worse, but my advice to you is this…enjoy what you have know, you’re now married and have a child, so enjoy them, don’t think about what might happen, as it may not, no one can predict the future, so don’t spoil the here and now. You say you look well, well I dare say about 99.9% of peole on here will say the same, including me, that’s again why it’s such a gruel condition. Enjoy today love, who knows what tomorrow will bring, good luck,
it is just another ‘normal’ response to have times feeling like a fraud. I suggest that it might be a better approach if you accept whatever your life is on a daily basis. Feeling fraudulent can lead to guilty notions and you are only guilty of having a condition that can behave in a myriad of ways. There is little point in trying to guess how things might change or comparing yourself to anyone else. Your life is your own to live and make the most of. I am not saying this negatively, I have felt like a fraud, I have felt guilty and it did me no benefit. I was diagnosed in 1991 and was lucky enough to still be at work in 2009. Others have been worse off, yet others have been better. I try to judge myself and others on how we are today and whether they are making the best of todays “normal” . This sounds easier than it is and I still have to work hard at not comparing my situation with others. I hope that you and your family have many great times together.
I have never felt like a fraud but i did feel as though i was mis diagnosed for years.For the first 15 years of my MS i didnt even know i had it.Then wham bham a big brain stem relapse soon changed that and ever since then boy do i know i have it.I always lookd very well and quite young for my age.i look my age and more now and i hardly have any mobility.So make the most of what you have now.It can change quite suddenly.
Thanks everyone. Jaydee, I’m sorry that you’re unwell and it hit so suddenly. It’s what I needed to hear to be honest. It can happen any time. I need to keep that in mind every day and live my life accordingly ( dmd, reduce stress, eat well, no smoking etc ).
For years I used to tell people ‘I’m quite lucky (apart from just the sheer bad luck of the diagnosis), I’m not disabled in any way, I can walk unaided, work, drive, dance all night…’!
Then in 2012 I had a very nasty relapse. Lucky for me not a brain stem relapse, but nasty just the same. I’d been gradually progressing for the two or so years before that (and wasn’t on a DMD due to side effects). But since early in 2012 (which was 15 years into diagnosis), I’ve used a wheelchair. I could walk a bit with a walker and a foot-up, SAFO or FES, but I was very reliant on my 'chair. I am now classed as Progressive Relapsing as I still have relapses even though I also progress bit by bit as well (best or worse scenario?).
So along with everyone else, I’d say MS is a contrary beast. It does what it wants, to whomever it wants whenever it wants. With luck, you’ll remain serious symptom and relapse free. You’ll get old with your MS, maybe feeling a bit fraudulent, but you’d still be a winner in the game of MS.
So enjoy living, happy and healthy. I’m now very disabled, but that doesn’t stop me feeling happy for others to be able bodied.
Hi Mary, I’m a newbie to this exclusive club having only been diagnosed with RRMS around 22 months ago. Lucky enough to have been relapse free for over 2 years. I also get the ‘You don’t look like someone with MS’. I’m in good shape and live a healthy lifestyle too.
I think like others have said, no two MS journeys are the same. Just live well and appreciate each day as best you can.
Hopefully as the years go by you’ll continue to experience good health. Treatments for MS are improving all the time and we now have access to knowledge and medicines unheard of 20 years ago.
I have a friend of a friend who has had MS for over 20 years and aside from regular fatigue is mobile and in fact only retired recently and not due to MS or indeed ill health.
When I was first diagnosed the initial “attack” lasted a few months but it seemed to spike and then drop away very quickly over those few months, not long afterwards I started to question whether my diagnosis was correct, purely because everything seemed to settle back to “normal”.
I was like this for around 18 months and then very little things started to crop up, the odd jerking of the legs or strange sensation when walking, but nothing massively obvious, but very gradually these episodes built up and up, getting more severe as time went on, but at no point did I have an obvious relapse, things just got worse by themselves, hence 6 years later being SPMS.
I would say don’t worry about what might happen, enjoy every day, month, year. Have a good life and do lots of things with your family and make happy memories.
We could all do with a crystal ball to see what the future will hold.
Everyone’s MS is different. I’ve had MS for 30 years. First 10 didn’t know. 2nd 10 sensory problems,
last 10 now SPMS and major mobility problems.
Who knows what will happen next? I do as much as I can within my limitations and make the most of everything.
Take care and try not to worry, just enjoy the life you’ve got.
I didn’t feel like a fraud or that it wasn’t real, but I did feel guilty. I’ve had MS for 40 years now but couldn’t get a diagnosis until last fall. I spent years trying to pretend there was nothing wrong with me as I juggled the bad spells with “real life”. My last relapse was bad enough that I had to quit working completely and lived off my mother until I could qualify for gov’t disability.
I finally sat myself down and had a long talk. Self, you didn’t ask for this, didn’t cause it, couldn’t have prevented it, and wouldn’t wish it on your worst enemy. Yes, you had to quit working after nearly 4 decades of full-time employment, but you worked longer than you should have because you wouldn’t give in. You switched to some pretty bad part-time jobs while still trying to support yourself until you just couldn’t do it any more. You didn’t beg Mum for handouts. She’s the one who pointed out that you were killing yourself rapidly and that she had enough money to spare. You don’t know if you’ll be bedridden or in a wheelchair within 3 years, but then neither does anyone else. Any neighbor, relative, or co-worker could walk outside tomorrow and be struck by lightning, trampled by an elephant, or diagnosed with stage 4 lung cancer in spite of never having smoked.
And that’s when I realized that I’m living a life right now that most people would kill for. I have a steady income that doesn’t require any effort on my part. I’m living in my dream house that’s slowly being fixed up the way I want it. I have a young dog that keeps me a bit active and provides bedtime snuggles. I have family to help physically and financially. I do whatever I want to do whenever I want to do it, because I set my own schedule now. It really doesn’t get any better than this, and I need to live in the now because none of us really know what the future will bring. I’ll deal with the future when it happens, but I won’t let it take away today.
Love your attitude to it Norasmum.I really need to have a talk to myself too as im getting bogged down in negativity this last 18 months or so.I have always told myself i wont worry until theres a need to worry.But just now things are getting a bit tough for me so i need to change tac.
Good for you Norasmum, I like you attitude…I myself do try very hard to think like this, but them every now and agin MS trips me up and I feel totally fed up with it all, when I can’t sleep properly because of the pain, when the fatigue gets so bad I can hardly move, do things for myself, go places on my own, I might have a good cry, get angry…but then I say Jean, none of that is going to help, MS is going nowhere, so straigthen you back bone and get on with it girl and I do. I never think about the future and what it might hold. And then I read what you’ve written and I think yes, come on, life could be a hell of a lot worse, so thank you for reminding me.