Hey all - well I got my MRI back today and it showed 2 lesions on the spine and one in the brain which confirms all the numbness on my body and the numbness with my first attack 6 months ago. I feel totally shocked and scared and like even though I have SO much support of my family and friends I have never felt more alone. I feel like I am lookin in on someone else's life right now and cant even belive its true. But I am sure all of you felt the same way after getting this diagnosis but Im just so scared :( I am so happy tht I joined the fourm as i would love to talk to other people going through the same thing. Just hope I can sleep tonight....
I'm so sorry to hear that you have been diagnosed with MS. It's such a tough blow on your mind and heart!! It's normal to feel shocked and to feel like it's not real. For me, I kept thinking "this wasn't supposed to happen to me", and "how can this be"
I'm so sorry that you feel alone. Though you have your family to back you up, they don't know how you feel and how very scared you are. Maybe this is a good time to really 'cling' to them and let them know how alone you feel.
One thing I can tell you from experience is that everyone on this forum will support and care for you all the way through this. This is the most loving group I have ever found. It's OK to share everything here. Let us be there for you and hold you up right now.
I'm so sorry that you feel so alone, I know how that is, I still feel it from time to time and it's so painful. Just know that we are here and you can usually find people on the board just about every hour.
I hear that you are scared and this is a shock and that is normal. For the longest time I woke up every morning thinking I had had a bad dream and it just is not true. It is hard to get your head around a disease like MS. Especially since so many of us no so little about it at the time of diagnosis.
I had thought about Cancer, Heart attacks and Diabetes but me getting MS that was something I had never imagined.
My first call was to the National MS Society. The person on the other end talked to me. They sent me literature and I found out about all kinds of programs like for the Newly Diagnosed. I educated myself on this disease and took part in many programs. I even started volunteering right away. I have met all kinds of new friends through the Society and on the Forum.
The main thing to remember is everyone's MS is different so you can't compare yourself. There is life after an MS diagnosis. Sometimes it takes being adjustable. You have to live in the moment and enjoy every moment you can.
Since my diagnosis I have taken a hot air balloon ride, hiked the Appalachian Trail, I have taken up dressage horse back riding, I have trained a service dog and am working on my second, and I am planning on zip lining next. My relationship with my husband and friends has gotten better.
It is okay to be afraid. The trick is to not let the fear paralyze you. You can't wait for the other shoe to drop. I find there is nothing to scary right at the moment it is always imagining what will happen next which is unbearable.
You are not alone there are plenty of people on this forum who can relate. We are here to answer questions and lend an ear to vent and to e supportive.
I'm glad you have an answer now! You'll be able to get on some medicine and will have some really good options to get your MS under control and keep it under control. There are a lot more options out there nowadays.
In my experience, reading up and learning as much as I could really helped make a difference. It helped me make sure I knew what my options were, what sounded right and what sounded wrong...when to call a doctor on the carpet and when to say no.... I had a lot of bitterness (and honestly still do about a lot of stuff) but I am confident that when I see my docs - they'll know that I know what they're talking about and they won't be able to pat me on the head and act like they want me to go away. lol.
Arm yourself and your loved ones around you with knowledge. There is so much help and support out there so just ask, You're not alone. We've all been there and that's part of the reason we're here now.
I hope you're able to sleep tonight. I know my ambien is starting to kick in....Sorry if there are egregious typos up there!!!
I'm really sorry to hear of your diagnosis. Most of us here can relate to your shock and your fear and your feeling alone. It's great that you have a strong support system of family and friends. I'm sure they are all worried about you and wanting to do whatever they can to make this easier for you. Let them help you when you need it. In the end our disease is very personal, no one knows what it's like to be in your body or in your head as you cope with this turn in the road. As Alex said, MS is very individual. Even PWMS don't know exactly what others with MS patients are experiencing, but we know enough to be able to be there for each other.
I hope you stay connected to this group and tap into the collective knowledge and support as often as you need to. In the beginning there are so many questions, it can be overwhelming especially if one is feeling unwell and/or is incapacitated. Chances are very good that at least one of us, usually more, had those same questions too and sought and received much support here. I hope you do too.
~ doublevision ~
ps: I see you're from Waterloo. Is that Waterloo, Ontario? There are many fellow Canadians here.
I am so sorry that you have become a member of the club here, but I really do want you to understand some important concepts.
First, this is one heck of a roller coaster ride and no matter how much you think you have come to terms with the diagnosis, it continues to be an up and down journey for about a year. It takes that long to wrap your brain around the idea. A nd even later we all continue to indulge our inner fantasies and want to think the doctors have the wrong person or disease. At least I know I do.
Secondly, the MS you might picture of people confined to wheelchairs and dying young is no long accurate. We live as long as the average population. And if you treat MS early with the disease modifying drugs we also know that over 80% of us remain ambulatory and don't even need a walker, let along a wheelchair. It is very important to choose a treatment plan and stick with it. Be compliant and don't deviate.
Third, even though those around you won't/can't understand what you are thinking and feeling, most of us here on this forum can and do relate. So remember you aren't alone - there is this community with the big heart willing to listen, commiserate, and hang out with you. We are also good at the ocassional kick in the rump if it is needed to get you moving in the right direction. And I must say they do it pretty well.
For now, please don't worry about getting details - MS is a slow moving disease normally so there is no rush. Take this time to be kind to yourself and slowly work through your emotions.
Wow, girl. I'm so sorry to hear of your diagnosis. I know EXACTLY where you are. My diagnosis is fresh (July 5 of this year) so I'm right there with you. Send me a message and we'll work through it together if you like.
This is a great group of brothers and sisters and they are some of the best things to have come out of my diagnosis. Take advantage of your new friends - we are all here for you.
My favourite thought is from the poem Footprints in the Sand: "God said, My child, I love you and would never leave you. During your times of trial and suffering, where you see only one set of footprints in the sand, it was then that I carried you."
Wow, memories being relived. I am sorry for your dx, it su cks at such a young age. It's okay to be scared. You will find the fear motivates you to stay on your meds and take good care of yourself.
The hardest part is dealing with the uncertaintly of your future. MS is unpredicable and effects people differently. Lulu is right, MS is slow moving, at least RRMS is and there are drugs now that help slow the progression.
The first few months are really difficult to find your balance. Your life feels like it's turned upside down. After all this is not what you had planned. No body plans on this.
The reality is that none of us have future's that are secure. Anything can happen to each one of us at anytime. MS changes your life but you will have a bigger role than you think in how those changes effect your life.
I am sorry, very sorry that you are going through this. Keep coming back here for support and fellowship. You have found the right place where people understand what you are feeling and we can help you as you navigate this new road you are on.
Thank you SO much everyone for all your kind words of support!!! My eyes were welling up with tears as I was reading each one:) I know I am in the "dark" part of this now and feel super down in the dumps, but I know myself and know that I WILL get back on track..just need a few weeks to digest and understand. Up until the other day I didnt even know how to Spell the name of this disease let alone know everything about it. So many horrible thoughts are in my head right now of "worse case scenarios" and Iknow that is just a SMALL part of it but I have to wrap my head around that because thats all Im thinkin' about right now! I am So glad to have joined this loving and supportive group and thank you for being there for me! I will be in touch and look forward to doing a lot more reading about positive stories and medication etc.. xxoo
lol nessie- i cant spell easy words- ha let alone that!! - but its usually very slow- im lol almost 57 -had this 4 i dont know how long- i still -ok- so but dont work-or drive anymore-
it could really be a lot worse- - hugs- its tough 4 a while- lol i still will oh feel bad or- weak-sometimes- and think what the heck??!! duh!! ms!! ya -it be ok
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