Last reply 2 months ago
What now?

I’ve been diagnosed with MS as of a week ago and I’ve cried everyday since being diagnosed. I feel like I’ve been defeated. Did anyone else feel this way when they got diagnosed? I already use a rollator and a cane next would be a wheelchair… which my dr has said she’ll be surprised if I don’t end up with one… any advice for someone who’s newly diagnosed ?

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2 months ago

Sorry to hear this. Honestly the best advice I can really give is to just take your time with this. What’s happened is huge and it’s gonna take awhile to come to terms with everything but eventually you do get there. When I was in your shoes I was the exact same; just a roller coaster of emotions, felt defeated and I didn’t wanna be around anyone. Now 3 years later I’ve come to terms with things, just been to New York and just living life the best I can. I’ve done this by putting my stubbornness aside and getting the help I needed from family, co-workers, friends etc and to also use the wide range of support available. Also remember there’s a wide range of treatments available for MS (I went on Lemtrada) so it’s worth checking to see if you want to go on any that are available.

Always remember that this forum is here to help you with this battle as much as we can. Best of luck.

2 months ago

@marcyg921 thank you for that that means a lot

2 months ago

Hang in there honey. I’m sorry you’ve had such a hard time with this. Are you using the rollator & cane already because of MS symptoms? Are you starting on a DMT? Feel free to vent here!!! We all get it!

2 months ago

@rmdaniels yea I started using them bc if it I had an episode where I had what they think was a stroke and I just broke after that and it’s been getting worse and worse since. I can’t even lift my legs to walk it’s just like shuffling bc my legs r so stiff

2 months ago

Your doctor is woefully out of date. MS does NOT automatically mean wheelchair, even for people such as you and I who have severe leg issues. Get on a DMT (disease modifying therapy — what we MSers call the huge selection of drugs available to us). Consider the variety of therapies, from steroids to exercise to alternative medicines & practices — I’ve have good luck with exercise & acupuncture. And know that you are never alone. We’re here. And we care.

2 months ago

Hello @amanda_claire, sorry you are going through this trauma, and traumatic it is, we’ve all been there. Rather than feeling defeated, you need to recondition yourself to be an MS Warrior, which we all are on here. MS hasn’t won and you lost. You are still here, communicating across the world, ready to go on with life. MS is an enormous setback and it will take time to digest what this means. But, we have all done it and you must too. Sending love and support x

2 months ago

defeated Thats what i felt after 3 years of daignosed felt my body is a stranger
Visited a prof 3 years aftter in new york he said I’ll end up bed bound by the end of 2011 if i didnt take tysabri

I did not take any other treatment 2012 we t to uk scotland to learn english stayed 2.5 years there
Without any treatment

This year i finished 9 years wothout yreatmdnt they insisted i start treatment and so i did “ gilenya “

Im still walking running jumping 15 years after daignosed

2 months ago

I’m newly diagnosed myself, only two months ago. Still not on dmt until more tests blah blah. For me the hardest part is all of the unknowns? How will it progress? How will my life change? Being an emotional mess is I think normal. I’ve found great strength and help on this site. The best thing I’ve heard is,” I have ms, it doesn’t have me”. Keep reaching out, it makes the journey much less scary.

2 months ago

I think everyone goes through this when they first get diagnosed, let yaself have your meltdown or blow out or whatever makes you deal with it and then sleep and then get back up and live! That’s exactly what I’ve done, since being diagnosed I’ve been to Paris, Rome, camping and road trips, constantly riding theme park rides with my munchkins and I’ve done this myself! I’m just coming up to the end of my UNI course which has been difficult because between looking after my munchkins, working in a school, exercising and trying to keep up a social life with friends is damn exhausting but I do it! I take time to chill and recharge on occasion but I’ll be damned if I’m gonna let it win!

Having MS doesn’t put an end to your life if you don’t let it, smile, find what makes you happy, try new hobbies and keep talking to anyone that will listen because I’m not afraid to talk about my MS which I think in hindsight has helped!

Keep smiling and look for the rainbows always! 😊

2 months ago

Hey @amanda_claire
I know a few other people have replied to you. It’s very very scary when you’re first diagnosed and you can feel like it is the end of your world but I promise you that this will get better.
I was in a similar position to you when I was first diagnosed – I was rapidly getting worse and I had lost the ability to walk. I was having relapses in quick succession and I didn’t know what my future looked like. My neurologist told me that by this year (I was diagnosed in 2013 officially although they think I’d had ms since 2004) I would be bedbound and completely reliant on others.
I am NOT any of those things – my life is not what I expected it to be, my husband (who met me just before my ms diagnosis and saw the very worst of my symptoms and still didn’t run off into the sunset…) needs to do a lot around the house because I can’t – but I work full time in the NHS, I learned to walk again, I can do yoga and I have a really good life. I have loads of random symptoms and my life isn’t easy but it’s better in some ways than it’s ever been.

I thijk like a lot of people here I would recommend looking into the disease modifying meds you are offered. I was progressing so quickly that I was offered tysabri (there are some others available now that weren’t around when I was diagnosed and some of these are perhaps more suitable for you!?)

I cannot tell you to take meds if you don’t want them – none of us are medical professionals. What I can say is that I have also found leading an incredibly healthy life with a good diet and exercise really useful. I’ve also found building a good support network one of the best things I’ve done.

Zoe xx

2 months ago

Hey @zoeb thanks for the response it means a lot.. reason I feel that way isn’t just bc I have a MS diagnosis it’s bc I have an Adhesive arachnoiditis dx also which keeps me from being mobile and doing things. I wish things were different but I’ve already been told by drs not to workout bc my back is so bad and that drives me crazy. And then to have them say I’m so bad off I’ll need a wheelchair … makes me feel worse.. that’s why I feel so defeated… I have a sdit that helps me pick things up and get things and luckily I got her before I was diagnosed so I was able to train her some but there r days I can’t even get out of bed bc the pain is so bad… how do U deal with the pain? My legs feel like cement n I can’t walk how do U deal with that? I feel so freaking lost right now if that all makes sense I hope so…

2 months ago

Are the doctors offering you any DMT’s, I know it made a difference for me after I started on them. Your neuro or GP should be able to give you something for your pain. Potter

2 months ago

@amada Claire
I was diagnosed in March, even now I still get different emotions such as anger, sadness and defeat
My worst symptom is fatigue

2 months ago

Hi Amanda Claire sorry to hear you’ve been diagnosed with the beast as many of us call it, I found that a diagnosis is like a grieving process, starting tearful and scared, followed by the anger and why me state then the acceptance and looking forward at the future. As previously advised take all the help and advice you can there’s plenty of it which can be overwhelming until you process it all. Most importantly remember you are not alone and this site is a good place for friends, help and advice, good luck to you on your journey were all here with you x

2 months ago

Hi, it does get easier to cope with in time, I brought the book by Judy Graham ms naturally its got some advise but really gave me some hope when i was first diagnosed,don’t always take notice of the experts, my neurospecialist was amazed after 7 years medication free,i had not got any worse, try to keep positive i know its hard.

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