Last reply 1 week ago
Starting the new year

Hello everyone. I was diagnosed yesterday with MS. I had an MRI done a while ago that showed lesions to my brain. Yesterday was when I finally got to see the neurologist, who gave me the shocking news that I have MS. I have been trying to stay positive and been doing a lot of research about MS. I just felt like maybe connecting with others who have MS will help me understand and give me the support I need. I’m a single mom to a beautiful 9 month old boy who I love more than anything in this world. I’m also a full time student and will be graduating this November as a surgical technologist. I just hope by reaching out and possibly meeting new friends will help me through this journey.

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grandma
1 week ago

@amber91 Hi and welcome😊 So glad you found us this early. First things, sit back (if you ever can with a baby to look after) have a cuppa as we say in the uk, relax, breathe deeply and don’t panic, stress is the worst thing for ms. You’ve just had big news, you need to digest it slowly. Used to be that a dxd (diagnosis) of ms was a life sentence. As you can probably guess by my sobriquet I was dxd 25 years ago, as the time no dmt’s (disease modifying therapies) available. I was told that rrms (relapsing remitting) would become spms (secondary progressive) in 10-15 ) years. Was put on the first dmt trial a year later, was on it for 23 years, then mine become spms, it took 23 so I’m not complaining. So basically you should be able to lead a ‘normal’ life

We’re all quite safe here. You can laugh, rant, cry, celebrate, moan, whatever floats you boat, we don’t judge. Huge range of ages, careers, disease progression etc., but there all behind you and you can ask anything, because somebody here will probably have an answer. Remember there is no such thing as a silly question with ms. That’s enough for now. Others will be along to say hello, keep safe, keep well, start to list down all the things you want to ask your ms doc/nurse next time cos you won’t remember them all when you get into their office! Talk to you soon and keep your chin up😜👂👏


stumbler
1 week ago

Hi @amber91 and welcome.

I believe that peer support is very important, as it’s quickly available and from those that are closely experienced with this condition.

Great advice from @grandma above. Just be careful with your research. Dr Google will find you some horror stories which are completely out of context. So, limit your research to creditable websites, e.g. the MS Society.

Otherwise live healthily, eat healthily and, as previously said, avoid stress.


amber91
1 week ago

Thank you both @grandma and @stumbler for your welcoming comments. I’m glad that I decided to reach out and find a support group that understands and have MS. Giving the news to my family and close friends has not been easy. My family is devastated with the news. My parents think I’ll become disable and have a short time to live and want me to start my Will, advance directive, power of attorney and DNR. Which I believe is unnecessary right now. I know it’s because they don’t understand what MS is. I’m just glad that I finally got the answers from what I’ve been feeling for the past couple of years and glad that I’ll finally get the proper treatment for it. However, I know the next couple of weeks or months is going to be a challenge for me since I have to do all the testings, multiple doctor appointments, taking care of my son and staying focus in school. But I’m sure with the support group I’ll overcome these challenges.


bonang1975
1 week ago

We are all here for each other never feel alone!!!!!


vixen
1 week ago

Hello @amber91, big welcome to you and glad your research has brought you to Shift. As above, do make sure you only trawl through registers sites which are regulated and accurate. You are so, so your family and especially parents will be terribly worried. But, MS is absolutely not the disease it was when they were younger. 20 years ago even, there were not the disease modifying treatments around which slow down progression, and now there are loads. People with MS have a broadly similar life expectancy to the population, but obviously your parents are also reeling from this diagnosis and seeing this is a disaster. Yes, it’s undesirable, @amber91, but you will learn to adapt to having this unwelcome guest, just as every single person on Shift has done. We are living in exciting times with research, and things are improving every single year in terms of outcomes. So, my advice to you, would be for now, take things one day at a time and let your feelings and emotions out as they need to. You do not have to rush any decisions, but you do need to accept every available support whilst you are recovering yourself. You have so much to look forward to with your graduation, so make sure your family help make this particular goal as easy for you to reach as possible. From your photo, you and your son are adorable; you are together and have a great future, and that’s what counts, MS or not…..xxx PS, maybe your mum could sign up on here for information too, other parents have done the same 🙂


rolly
1 week ago

Hi @amber91 and glad you found us, though I wish you wouldn’t have to. But it’s good that you have reached out to others with MS, who can share their experience and give you great advice.
Obviously not a great way to start a New Year, and it’s a lot to take in, of course. I can also understand that your family is devastated. Your parents probably have all those images of people in wheelchairs, fearing the worst for their daughter. I can’t blame them really, but I also believe that they know little about MS.
You may find that – ironically – it will be you to have to calm them down and give them support, rather than the other way round. But it’s a learning curve for everyone.
The dx may have come as a shock, but it also gives you the chance to move on from here and take on this battle. Many of us have lived in uncertainty for years, knowing that something was wrong with them, but not getting any answers. I don’t know what led to your MRI in the first place, and for how long you’ve been having trouble with your body. But my hope is that this was a quick diagnosis, which has to be seen as a positive.
There are so many treatments out there now that there is absolutely no reason to think that you will end up in a wheelchair, or that your life will be cut short.
I was dx’d 23 years ago and didn’t have the chance to benefit from all those treatments that are available now. I am now secondary progressive, and the MS hasn’t been kind to me.
But what what the others have said above is very true. Do not hesitate to ask us any questions. Everyone is here to help you through this. Stay positive!


dominics
1 week ago

Hello @amber91 ,

Not what you want to hear to start the year. Nonetheless, life isn’t over. Positive mental attitude, exercise and a good balanced (no need to get wacky, just lots of fruit and veg and less processed food) diet are positive things.

I have had it 25y and just completed 2 degrees. You learn to pace yourself and be more selfish with your ‘good’ time. You have to be.

A good neurologist that is interested in MS as their primary thing is essential. Many will cover it but if it isn’t their main thing and research interest they simply won’t be as up to date. You want them to be a little obsessed! Best for you if they are. Your family Doctor ought to be able to point you at the best practitioners. If you are in a medical environment you know just how much the professionals can gossip about the strengths and weaknesses of their peers 😉

Most of all: never let it get you down, for it is winning then. Easy to say, I realise. Have people around you that get it and get you. It is crucial as you’ll need their help at some time.

All the best and ask anything you like. Don’t believe the woo that you’ll come across.

Best,

Dominic


joanne46
1 week ago

Hi
I was diagnosed late 2017 and was devastated as my father battled with MS in the 70s when there was no treatment available and he didn’t exercise, smoked heavily and most damaging g of all received no treatment or support and those were dark times in my memory,
However we are both in a different era and I truly believe those who fight it hard can conquer so much now. My idol is Montel Williams who has fought and won for many years.
So, my advice to you is an echo of Dominic’s above. Find yourself a neurologist who specialises in MS. Take their advice on treatment. Stay fit and strong and slim and look after your health. My son is 18 and the light of my life and I am determined to stay well for him. So can you. Keep fighting and stay strong. x


amber91
1 week ago

@bonang1975 @vixen @rolly @dominics @joanne46
Thank you all for the support. I really appreciate it. I never thought in a million years I’ll be diagnosed with MS. The past 5 years I would have horrible dizzy spills, blurred vision and feeling unbalance. I’ve always thought it was probably my ears since I was always prone to ear infections. One of my worse episodes happen 3 years ago. When I woke up one morning I got so dizzy that I fainted. I was incapable of standing. Every time I stand up I fainted. Those symptoms lasted two days, and afterwards I was dizzy and felt unbalanced for months. I never went to the doctor for it because my boyfriend at that time told me I was being dramatic and my symptoms wasn’t an emergency situation. On and off I would have horrible dizziness and blurred vision that would last a couple of weeks to a couple of months. This would happen 3-5 times a year. A couple of months ago my symptoms were different, which brought major concerns and I’ve decided to go see a doctor for it. In September I woke up feeling really dizzy and almost fainted. My symptoms gotten progressively worse from dizziness, weakness, extreme fatigue, slurred speech, unable to focus, memory loss, having to hold on things because how unbalanced I felt. What made me decide I had to go to the doctor was when I was carrying my son, I got extremely dizzy I almost dropped him. I knew then something was wrong. That’s when my general doctor did an MRI and there was lesions to my Brian. She couldn’t tell me much and referred me to a neurologist who I finally was able to see on the 4th of this month. And that’s when he told me I have MS. It’s been a bitter sweet moment to finally know what I was dealing with for the past couple of years. It just scares me not knowing what can or will happen to me later in the future. Thank you all again for your encouraging and humble comments.


edmontonalberta
1 week ago

@amber91

First things first; write a will – everyone should have one especially you since you have a child. They cost nothing; you can write one yourself. Just need some non-family witnesses. Google Search will help you word it properly.

Second, there are 4 types of MS. They are all different so our assistance will be more helpful if we know which type you have. Posting the type under your profile is easy.

Third, as others have highlighted, life goes on… Actually I was more concerned about you being a single Mom more than I was your MS diagnosis. That should tell you MS should not be a major problem so long as you eat proper, take the right medicines, have a good support network, etc…

And yes, feel free to have your family members check out this site. It might help them relax a bit… 😉

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