Last reply 4 years ago
Newly Diagnosed and confused

Hi everyone! I was just diagnosed with ms in October last year. I feel lucky that it was caught very early. I only have two lesions at this point. I’m feeling a little crazy lately. My doctor told me to call if I have any new symptoms or anything lasting more than 24 hours so they can treat it if it’s a new lesion. I still haven’t figured out what’s the difference between just normal every day symptoms and what’s a true relapse that needs to be treated. I don’t want to be paranoid at every little feeling I have and not know when to call the doctor. But I don’t want to ignore it and suffer further damage. All my symptoms are pretty minor at this point other that the occasional vision problems which looks similar to a migraine aura and knocks me on my butt with exhaustion. When I get it, it lasts between 30 minutes to 2 hours and I feel like my brain is buzzing! Then I’m usually dopey for the next couple days.

Can anyone relate? Am I normal for feeling a little crazy? I just want to learn how this disease is affecting me and how to deal with it!

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4 years ago

Hi beth35. My only advice would be try to explain to any medical staff precisely how you feel. Don’t say your legs are stiff if they are just heavy for example. They will give you tablets to help with what you tell them. You don’t want the wrong stuff. Resurch anything you are given. Don’t belive they are giving you the right thing, and just take care of yourself. Try to exersize lots while you can. Keep smiling. Stay happy. This will all help. X

4 years ago

Hi @beth35. Not sure if I’ve got any helpful advice but just wanted to say hi.

There is the 24 hour thing ie. if you have symptoms for more than this it may be a relapse. But then that doesn’t mean that you would definitely get treatment and your Ms team might want to adopt the wait and see approach. I haven’t had too many relapses but that seems to be what my Ms team does – have only just received steroids after having symptoms for three months! (Next time I will definitely push for steroids earlier!).

Regarding your eye problems – I have had experience of this although not lately. I didn’t know if it was the beginning of a migraine though (am reluctant to blame everything on Ms) – but what I did was take ibuprofen and go back to bed for a few hours. It seemed to work and let it settle down again. But I would mention it to your neuro at your next meeting or earlier if it really troubling you.

Otherwise hope you’re getting on ok. Even though I was diagnosed in 2003 I feel that I’m back at the beginning too. I had a period of 11 years with nothing until having two relapses recently in 13 months apart. Trying to deal with all the info and emotions again, not easy. Take care for now.

Emma x

4 years ago

@beth35 , Newly Diagnosed and confused is about right. We’ve all been there and some are still there or just arriving!

This is just another one of those learning curves that we go through from time to time. It’s all about learning what you can about MS and learning to live with your body and understand its little nuances and foibles.

Take your time as you acquire this knowledge.

Yes, we do need to understand what is MS related and what is a normal everyday condition. We need to have an open dialogue with our medical team to properly categorise a change in our body.

Apart from being patient with yourself, adopt a balanced lifestyle. By that, I mean a healthy, balanced diet and avoid extremes, e.g. overdoing it.

And try to banish stress and worry from your life. These negative emotions have no positive outcome and can antagonise MS and its symptoms.

So, feel free to hang around here, read, join in, ask questions or just have a moan. 😉

4 years ago

Thanks for your responses! I had actually contacted my neuro yesterday before my message. I had another MRI today (which I was called back about within 4 hours! Wow!) which showed no new lesions but the one is still active and has been since my diagnosis! So that’s good news that nothing is worse but also good to know I’m not imagining things! Starting iv steroids later today. Anybody have any bad reaction to those? I’m hoping I’ll be back to my old self and back to the gym soon!

4 years ago

@beth35 , steroids aren’t quite a quick fix. They may give you a metallic taste in your mouth and may give you an immediate high, which can be followed by a “steroid crash”.

But, the steroids will be working with your body, over the next 6 to 8 weeks to address the inflammation causing this latest activity.

I’m sure you’ll get back to the gym, just don’t rush there too quickly. 😉

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