When I was diagnosed, I was 19, a sophomore in college and had the stress of finals looming over me. I didn't think much of it, in fact, I didn't even think I had it. Though I took Copaxone and ate healthier and lost weight.
I'm been exposed to that protein that causes PML so I can't take aggressive meds and we were trying for one more baby.
It seems like every time I'm severely stressed, I have an episode affecting my vision, fatigue, mood, or loss of feeling from the waist down. Despite all of that, my MRI's are showing little to no disease progression which is wonderful but my mood shifts still happen.
Like no, with this virus going on, I'm so scared. I'm scared for myself and my daughter who is only 2. I've been lucky in the sense that my symptoms are there during stress but no MRI progression. I'm lucky I have a family, even though my husband doesn't understand. But I am scared! I was young when I was diagnosed and my brain always goes to the worst.
I'm literally shaking writing this because I feel like MS was a death sentence. Like I won't be a good mother or a good wife. I can't focus on work right now because all of this crap going through my head. I'm frightened that the worse case scenario will happen and I'm obsessive in my research. I just started Prozac and Xanax a couple of days ago, but i'm pretty sure Prozac gave me a panic attack and flushing this morning. I just want to be normal, and I'm not.
Sorry for the long post but even after talking to the MS Hotline after an hour and a friend for an hour, i'm struggling. I think I'm dying. I think I have no life. I'm shaking so bad and all I do is cry. I know depression is chemical. But I need to instill that there is hope for the future. I was young when I was diagnosed, and I need to know that not everyone will become disabled due to MS, that there is hope for a cure, or there is just hope for ME! A lot of the research out there with disability prognosis was before there were treatments. I need someone to shed light on me.
Please.
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jazdr
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You are trying for another baby so your husband must love you a lot.
I have known about my ms for 10 years but they reckon I had it about 20 -30 years before dx. I am now soon to be 64, married with 3 grown children and 4 grandchildren. I have PPMS, I use a walker, it gives me more confidence.
Ms is so unpredictable but the worst thing for it is stress.
Over time you learn to take deep breaths, you get in tempers, get tired, hurt everywhere, sometimes you wonder how you can hurt in such places, but at the end of the day you have to have hope.
I think of hope as meaning try and be Happy. Be Optimistic, be Peaceful, and have Empathy, because you never know when you will be able to help someone else in a similar situation as yourself.
Depression is hard, we all get it in some form at some time.
I have found this forum as helped me as I can vent, laugh, cry, with people who understands and nobody judges you.
Thank you! I have RRMS and I just got off the phone with my doctor. He said that I literally have had no change in my MRI's since being diagnosed 8 years ago. He also so my MS is very mild and that now, with all the treatments out there people rarely become fully disabled. Plus, WHO KNOWS what will happen in the next 10-15 years.
I have a history of anxiety and depression so he thinks with things going the way they are that I'm getting severe depression because of it. So we are trying to medicate and get me back to normal. Overall, he told me I'm going to be okay, I'll still be able to live a happy, healthy, active life. He's more concerned about my depression and anxiety than he is my MS. Especially since my stress is exacerbating old symptoms.
-> This is me trying to be positive and hold myself accountable for it. Until the meds start to work, I need to remind myself that I'm okay, that I WILL be okay.
I was scared to reach out to others for a LONG time because I didn't want to see what could happen. I wanted to be ignorant. But that also means I don't see all the good things people are experiencing as well. Life is messy for everyone and I need to remind myself that I am not alone.
Oh my dear, I've had MS for more than forty years, and no, you can't know what's going to happen to you. But I can tell you that when I was diagnosed, my neurologist asked me what I was most frightened of, and I said, "incontinence." He said promptly, "We can deal with that when it happens." All I can tell you about that is that incontinence is so trivial compared with things that can and have happened, and looking back on it all, I have to laugh! Kiddo, no matter what happens you have a choice. You can let it kill your peace and all your dreams or you can look it in the eye and say, "Not today, MS." Just make sure you have your support teams in place, and make sure that you know you are so much more than your diagnosis. You'll learn by going how you have to go. That's a quote from this poem: poetryfoundation.org/poems/... Some day you'll look back on your early years with MS, and you'll smile because you've come so far.
Hi jazdr it is a very scary time out there for sure. I'm not going to lie about that. And you came to the right place, you can always find hope here. Cause, well.. it's not so scary when your with friends who get it.
First off, breathe... And again...
No! Not everyone gets worse with MS! And sounds like your MRIs look great! And that's a good thing! So that's what you need to focus on!
And this very important! No one has the same MS! I have RRMS, but mine is different and will affect me different than you! Or anyone else!
You have a beautiful daughter and sounds like a supportive husband! And that's a good thing! So breathe!
Thank you! I have RRMS and I just got off the phone with my doctor. He said that I literally have had no change in my MRI's since being diagnosed 8 years ago. He also so my MS is very mild and that now, with all the treatments out there people rarely become fully disabled. Plus, WHO KNOWS what will happen in the next 10-15 years.
I have a history of anxiety and depression so he thinks with things going the way they are that I'm getting severe depression because of it. So we are trying to medicate and get me back to normal. Overall, he told me I'm going to be okay, I'll still be able to live a happy, healthy, active life. He's more concerned about my depression and anxiety than he is my MS. Especially since my stress is exacerbating old symptoms.
-> This is me trying to be positive and hold myself accountable for it. Until the meds start to work, I need to remind myself that I'm okay, that I WILL be okay.
I wonder if realistically and intellectually, you can recognize all the positives, but are having trouble emotionally right now. Counseling may be a good thing to consider, along with medications. You are always free to vent here any time; we're always available for understanding and a pep talk. But counseling may help you find better coping mechanisms to prevent these feelings of panic.
Please let us know how you're doing. And I'm so glad you utilized the help line.
Thank you! I just started taking Prozac and Xanax. I took the Prozac on an empty stomach this morning (my fault, I know) and I felt horribly sick. I felt like I was having a panic attack and dizzy. I know it takes time for them to build up in my system, but this morning and yesterday were terrible days for me! I am planning getting back to a plan with my psychiatrist. Thank you for being there. It really means a lot.
Oh BTW? I don't think your dying, I think your having an anxiety attack. I get them also. They suck! I take half a Xanax and focus on a game like Yahtzee for a bit😉 but ya gotta breathe! And let that fear go.
What kind of games do you like? Or do you have time with the little one? 🤗💕🌠
This means so much. I have Xanax and Prozac right now but since my hormones are currently off the charts, they aren't working as well. I work from home currently (with everything going on they had my whole job work from home) while my daughter goes to daycare for essential employees. Once I get her, she helps keep me busy. I also try to keep working out and keep up with my self-care routine.
You’re going to be a different wife and a different mom. That’s ok! Even with your limitations, you will love and appreciate your family in a way that most people can’t.
Headspace is an app that has guided meditation with a lot of options, one is for anxiety. There’s even some for kids! YouTube has a lot of videos on how to manage anxiety also.
Buy the book “Little Monkey Calms Down” for your toddler...there’s something good advice in it for you too! No one is born knowing how to manage this crap. It takes practice. Add MS to the mix, and for some people it takes a lot of practice 😵
The first thing I would like for you to do is to look in the mirror and say "I love you" to yourself. Do it every day. The second thing is you have to change how you look at MS. It's only a death sentence if you let it be. Look at life with a positive outlook and see the beauty in this world. Look at the glass as if it is half full rather than half empty. Your attitude about having MS is very important. If you keep feeling afraid of it, the beast has won. You have to get up every day and fight, smile when you feel like frowning, act happy when you are feeling sad. Research as much as you can about MS. Knowledge is power. The more you know about it, the less you will fear it.
No changes in your MRI is absolutely wonderful! Your MS is not progressing, as it is a progressive disease. Your body, even without MS, will react to stress. it comes out is all kinds of ways, like a backache, a headache, etc. If you are stressing it is just exacerbating the nerves that have already been damaged.
The biggest key to living with MS is to accept you have it and it isn't going away. Be thankful every day that you have people in your life that love you. And know that you are not alone in this. There are so many new treatments that make life with MS so much better than there used to be. I changed over to Ocrevus from Copaxone and it has done wonders for me. Most of my MS symptoms have disappeared. I don't have the fatigue or depression anymore either. I was diagnosed in 2005 for my 50th birthday. I have been aware that I have MS for 15 years. I've probably had it for 30-35 years before that. I had 9 active lesions on my brain and 5 on my spinal cord, yet I was grateful that it was only MS as it could have been a malignant brain tumor! I'm still grateful today. My life has changed in many ways. I have had to slow down, take things one at a time and not get overloaded or overheated, etc. I am now able to enjoy the beauty in this world. I stop to smell the roses and enjoy their beauty. Slowing down has actually given me more time to get things down. Sound strange but true.
So accept that you have MS and if you have faith, give it to God to handle the details. God's good at taking your burdens and lightening your load. I have developed a very close relationship with God since my diagnosis. I asked Him to not let my MS get any worse and it hasn't since 2006. I asked and believed it was already done.
I pray that you can come to terms with your MS and know that you are stronger than it is. I pray that your anxiety will leave so you can enjoy your life, even with MS.
Thank you everyone. Right now doctor says my serotonin levels aren’t imbalanced so I keep having these very scary panic attacks that make it very hard to function. I’m trying not to rely on just my Xanax when one hits as I know it’s addictive. I started Prozac about 3-4 days ago so I’m just waiting for that to build up so these attacks go away. I never used to get them this bad and they seriously hit out of no where. I try to meditate, but it is very hard when my body is shaking all over and my chest tightens. I even tell myself I’m okay over and over but Xanax seems to be one of the few things that work right now.
I get it jazdr ! I was 25 and just starting my career in healthcare financial management. At that time (1985) there were no treatments. When we were looking at houses the next year, my mother-in-law told us to make sure we got a ranch because I wouldn't be able to do stairs. She was an RN. So not only was I telling myself I was doomed, I was getting it from family.
But, I went on to work for 27 more years. And you sound like you are carrying on too. Remember, your daughter needs you! I still struggle with depression but most days I can still go on. You are not alone. Keep trying antidepressants. There is genetic testing to determine which one is best for you.
This is a safe place to be vulnerable. Leave your fears here with us. Somebody else said we have something to be grateful for. That keeps me going. It’s not fatal after all. Try doing things that make you happy. MS has forced me to find and focus on my strengths. And I’ve been able to adapt. Couldn’t work full time so I started my own business. Never ever would have done that if I didn’t have to. Glad you are reaching out for help. You are more than you think you are. Best wishes.
All the political stuff, then Covid 19. Between the two of them I could feel myself falling apart. I made myself stop social media that talks about them so much, like Facebook. Within a day or two I was feeling better. All this depressing stuff pounding at us every day... It gets to be too much.
Hi jazdr hope you are feeling better now. I’m so glad you reached out for help. This is a good bunch. Keep breathing. We will get through this together.
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