Hi Everyone hope life is ok, just been formally diagnosed with RRMS and about to start taking meds, it’s been a really tough and long journey already to get to diagnosis which took 5 years from noticing symptoms,hard to hear but sort of a relief, the hard part is watching my mother pass last year from MS after years of caring for her is a hard pill to swallow.Really worried about dealing with the future and the energy it will take.hope to get some understanding from people who know,much respect to all that deal with this illness xx
That’s tough news to get after a long, hard road to get there.
Sorry to hear you have joined the club.
What DMTs are you considering?
I am sorry about your mother.
Thanks how’s your journey so far how you coping?
Thanks she isn’t in pain anymore which wasn’t nice to see, I’m taking vumerity to start with and see how that goes , my understanding is it will only prolong the relapses and not help any symptoms.hows your journey so far?
I’m sorry to hear of your dx and the passing of your mother with this rotten disease.
From what I’ve heard, MS is the act of falling and death is the impact, further down below.
Treatment today helps slow the fall and hopefully lessen the impact.
I started on brabio in June 23. Waiting for my first MRI after treatment. I have changed sensation on part of my face. My final two options were brabio and vumerity. I picked brabio because i know i could do injections. Had to do them while pregnant
Ah really sorry to hear about your mother. Then getting the illness yourself must feel very awful.
I am straight out of a family with immune disorders with my grandmother and her sisters all dying from brain tumors or other brain problems, my mother being essentially taking half her body weight in pills every day, wasting away, and my sister now also getting Lupus, on top of then me getting MS about 2 years ago. So I might be able to relate a little bit.
Muchthesame makes a good parallel just above in describing what MS is. Indeed I have to say similarly every time my Japanese colleagues ask again if I think I’ll be recovering soon. No, sadly, this illness is [slowly dying, trying to die yet a little slower with medicine]
Vumerity seems common lately among newer diagnosis people. I was on Tecfidera which is apparently similar, but it wasn’t strong enough for me it seems. Was getting roasted by the flushing side effects too unfortunately. I wonder if Vumerity is better, think I’ll read up on it a bit. I’m on Gilenya, but that’s not strong enough either it seems so looking around at other medicines these days. As you say, the medicine doesn’t actually help with symptoms, it just slows down new ones appearing.
It really sucks to be smacked with the MS diagnosis, but just as I am sure your mother deeply appreciated your care you too are not alone and any little bit of happiness you can pick up on this new journey will surely help you. Generally speaking we’re just playing darts with the symptoms, no-one has any idea where their next troubles will be and so we gain very little from worrying too much about the future. If something shows up, get some steroids or otherwise available treatment, and otherwise just enjoy all the things you can do can like to do as freely as you can.
You’ll likely get used to lots of the little annoyances you’ve probably already gotten and then nothing brightens the spirits a little like cracking a couple of jokes at it. Like when I read about side effects of the medicine and came up with both diarrhea and constipation in the same sentence, and my little toddler then very kindly handed me one of his diapers with impeccable timing. When we can smile at all the nice little things that surely happen all around us, this rubbish illness seems much further away surely. Having people around you that laugh with you is so important, even if they are just something like the people on this forum.
I have changed up on DMDs too (Avonex to Tysabri in my case) and the only thing I regret is leaving it so long. The last relapse before Tysabri was one that really knackered my mobility for good. I could have done without that one.
Hi Rich. I’m a near 70 year old male, diagnosed approx 17 years ago ( around 53 years old at the time). My diagnosis came after an episode of optic neuritis and I was started on Avonex not long after. I’m pleased to say that for some 15 years the MS didn’t affect me too much- other than not being able to walk for more than around half an hour. Things have deteriorated over the last two years although I can still walk unaided for 15 mins or so. Beyond 15 minutes of walking or general activity I do get tired and weak. I hope very much that you have a good number of years ahead without any significant impact from MS.
To have MS while your pregnant is tough but I hope the symptoms aren’t too debilitating but all worth it in the end ,best of luck x
It’s funny 5 years ago I was running marathons and going to the Gym 3 times a week,now I can just about go for a walk for 1/2 an hour.
Its sole destroying but somehow we have find some good between the restrictions and being with people that want to make you feel good and laugh is a great remedy,I remember my mother towards the end watching and smiling at me and my brother laughing and talking in her care home,to smile when your so disabled shows the power of laughter and family.
How did you know your meds weren’t strong enough? I was going to have Tecfiderer but apparently Vermerity has better side effects.
I know the journey will be extremely tough at times and I’d preferred not to have front row seats with my mum as ignorance is bliss
I like you can’t walk that far without dragging my leg or feeling exhausted,I’m only 50 and apparently have RRMS but I’ve not had a remission for 18 months and I’m getting worse so that would suggest SPMS but I’ll go with it , I know everyone MS is different but similar and we have to take from each day whatever we can.
To be honest it’s still unbelievable I have it but I have and I need to figure it out somehow. Take care my friend
Hi Rich. My aunt had MS and as you say, it’s not nice seeing a possible future for yourself. I try to do everything possible to slow down the MS including generally following the recommendations from ‘Overcoming MS’ ( a book and website from an Australian professor of Medicine who has MS himself and offers recommendations on diet, exercise and meditation/mindfulness); eating anti inflammatory foods ( lots of turmeric ) and some of the things that are undergoing trials and can be bought on the high street ( Alpha Lipoic Acid and N- Acety Glucosamine). No idea if this this is helping but - who knows.
No I didnt have Ms while pregnant. I have a blood condition so needed to inject everyday to keep blood thin.
Only found out Jan23 that i have ms
Hello again, thank you for your reply.
I too used to jog quite a lot, at the very least 40 minutes every single day no matter how and where I had to do it. I too dreamed of running a marathon someday and show off to my little boy hehe.
But alas, it’s by the skin of my teeth I try to get at least 10 minutes, ideally 25, most days now. Balance is just terrible. I do find I work better with the exercise than without though.
There is definitely truth to that old idea that you get more energy from exercising even if it makes you tired. The days I don’t manage to get out and run even just a little I am just weary and almost dizzy from late afternoon until I go to sleep basically. Those 15 minutes with a warm shower afterwards warm me up in so many ways it seems.
But it sucks having to be so careful and not be able to just enjoy the fresh air and the view of nature and such like I used to. If I walk or run casually my right leg just randomly buckles under me sometimes and I have to scramble to catch myself halfway down. Seems to be a remnant from numbness in my thigh muscle.
I was all but unable to walk after changing medicine gave me a massive rebound. But 2 times 3 days of steroid IVs saved my mobility.
It was right after my son was born though so it well and proper sucked to have to spend almost a week at the hospital, during Covid where visitors weren’t allowed no less. One of the loneliest times of my life.
It’s really nice you have such happy and positive impressions and memories of your mother though, it’s really great that that sort of image can be the remnant impression rather than just nonstop tears and frustrations or something.
As for my medicine, I was getting too many attacks and too much disease activity in my brain so the doctor recommended swapping. I do it seems have less random activity on Gilenya now but still getting attacks unfortunately.
Yes Tecfidera is famous for being very uncomfortable with the flushing and stomach side effects. It is one of the most popular medicines to change away from quickly it seems. I had burning skin after every meal while on it, that wasn’t nice.
Hi Rich1 all very best wishes for your journey ahead. My sister’s MS is fairly benign (barely effects her life at all, just the leg effect slowing her park runs) and only developing very slowly if at all, and she’s older than you. And research, thinking and treatments are developing - who knows there may be some good steps forward within your timeframe. Very best
p.s. can I ask, what tipped the balance to your diagnosis being made (e.g. was it lesions showing up for the first time on an MRI scan? had you had clean MRI scans before?)? Thanks
All variants of MS affect people in similar ways but to different extremes so that’s why the duos so uncertain but it sounds good so far for sis.
My diagnosis was confirmed later than it should have been, My last MRI showed live lessons backed up by a Lumbar puncture but the previous specialist 6 months prior failed to spot lessons on that MRI too.
I believe you weren’t asking me, but I will just sneak in my reply to this as well if that is okay, just in case that might be of use to you as well!
I personally had an MRI taken around 2-3 years prior to my diagnosis after being slapped a little by a car on the bicycle and landing face first in a soft ditch breaking my glasses. My vice principal at the time, a kindly elderly fellow, insisted I took some sort of scan to make sure after I made it to work, so he drove me to the nearest hospital. I didn’t want a CT scan due to the radiation, so he paid me an MRI. It was the first time I even heard the word so I had no idea how different and indeed how expensive a scan it was. Should have sent him flowers…
The result was clear, the doctor said there was nothing and that I had a very pretty brain, whatever he might exactly have meant with that!
Over quite a while I cannot place very accurately I had a variety of odd sensation issues on my back. about half a year prior to diagnosis I also started getting odd cold spots on my left arm and hand, and in the left side of my face. I thought this was just due to stress from living and working in a very old fashioned school in Japan which is indeed about the most infamously horrible work environment you can imagine in western society.
In hindsight, I believe I might also started having a little bit of trouble with my short term memory. It is something I notice quite clearly NOW, but in the past I was just always called careless and such and never thought more of it.
I also have reduced hearing on my left ear, and my left eye has a bit worse sight than the also slightly bad right one, but they are both from when I was younger so I never connected them with MS.
Well, all in all I had various things for ages so one new here and there never really got me all that super worried except I thought my job wasn’t good for me.
What triggered my diagnosis was losing consciousness during breakfast, entering what seemed like an epileptic attack of tightness where I bit my tongue to bleeding from the mouth and wouldn’t move until my wife basically knocked me sideways off my chair. I hit the corner of the table with the head on the way down and seemed to her to wake up somewhat, but I was acting strange. Talking gibberish and acting whiny. I apparently lumbered around and went to get a beer in another room despite her talking and protests, and when she tried to pull me back I complained she was hurting me. She then called an ambulance.
This is what I have been told at least, I have no recollection of anything until I suddenly indeed woke up in the ambulance, my last memory being my morning coffee more than an hour earlier.
I was emergency-hospitalised, CT scanned to check for a stroke, with nothing to see, and then MRI which showed 9 lesions in my brain. Further MRIs, contrast agent scans, some other stuff I cannot remember and a spine fluid check followed. My very young doctor who was trying very hard tried his best to explain to me in English that he thought it was MS, and further checks were with that in mind, and so in the end about a week later that was indeed the conclusion and I was put on steroid IV and started Tecfidera as fast as the local pharmacy got it in stock a week or two later.
Ultimately, it took a pretty big event to get things properly moving I guess, but after that it went super fast. I never ever suspected even the tiniest little bit I had something with my immune system and the MS declaration came as lightning from a clear sky and I was completely in denial at first considering 2nd opinion etc to run away from it with.
Afterwards my mother told me “ah, yeah you got that virus when you were a teenager from your first girlfriend, and I always worried it would lead to MS”. That too was quite a blow to all of a sudden then be told.
Super long story sorry! Hope it can be at least a little useful or interesting.
For you Rich, it sucks that things didn’t move as fast for you as they should have. Fast treatment is apparently quite important so really hoping things are moving better for you now, is the medicine treating you alright? It was side effect hell for me the first half year or so, wouldn’t wish it upon anyone!