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MS Diagnosis, Courses, and Stages

Working up the nerve to have that MRI

  • By J Bel

    Hi all. I haven’t been diagnosed yet, but have suspected MS for years now. I didn’t even know much about MS until five years ago, when my younger brother was diagnosed. He’s 34 now and I’m 38. For him, it started with blurry and double vision. The eye doctor sent him to a neurologist who confirmed MS. We were shocked. I myself struggle with anxiety, depression, migraines, moderate scoliosis, endometriosis, and chronic neck pain. I believe I’ve had several episodes in the last couple of years and what they all have in common were they were times when I was under extreme stress. Recently, we’ve began having our bathroom remodeled. The stress of the change and constant noise started to affect me. I woke up one morning with severe pain in the left side of my back, around to my ribs. It hurt so bad I went to the ER. X-ray was normal. Said must be muscle related. Two days later, same terrible pain, now with urinary symptoms. ER thought for sure kidney stone. Blood work, urinalysis and CT normal. Sent me home. I had mentioned this to my brother, that this pressure in my ribs was awful. I couldn’t breathe. That’s when he told me about the MS hug and i knew immediately that’s what I was experiencing. He is encouraging me to get an MRI scan and it scares me. It’s almost like I don’t want to know. I’m feeling so broken down from the pain and fatigue and emotional stress, I don’t know if I can handle it. I know the earlier it’s diagnosed the better. I guess I’m just looking for some encouragement right now. Any suggestions or advice would be greatly appreciated!

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  • By DonnaFA Moderator

    Hi, J Bel, we’re glad that you’re here and that you reached out. It is definitely scary facing the unknown. Please know that you are not alone. A few of our contributors have shared their experiences. You may identify with the sentiments shared in Whenever I Feel Afraid…, Dealing with MS Diagnosis, The Anxiety of an Upcoming Test.

    We’re always here to lend support and share information or just to listen. Understandably, sometimes you want someone to sit down with, over a cup of coffee. You can find someone in your area through the MS Society’s One-on-One Peer Connection, or call to talk to someone at MS Friends Peer Support Line – 1-866-673-7436. Thanks for being here. -All Best, Donna (MultipleSclerosis.net team)

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  • By J Bel

    Donna, thank you so much for your kind words of support and encouragement! I read the articles you suggested and it really resonated with me. Especially the part about, it doesn’t affect just you, but your family as well. My parents, my mom mostly, took it very hard when my brother was diagnosed. It came out of nowhere. We all grieved with him for years. It has gotten a lot better now. He has few relapses. We are stable again. As for me, my parents have no idea what I’m going through. I have to hide it from them, but it’s hard. Just recently, I turned down a trip to the amusement park with them because I knew with my heat intolerance and stiff, sore legs, I just couldn’t do it. They’ll tell me I’m just out of shape and to walk more and they have no idea how hard every day has been. Now knowing how they reacted to my brother’s diagnosis, how can I put them through that again? My mom somehow thinks it’s her fault (which is ridiculous) but now two children with MS? I know I need to get help soon. I’ve put it off as long as I can. But God, I’m almost more worried for my family than myself. Well, now that I’ve written a book, lol. Feels good to get this out and I think support is huge for anyone facing this. So thanks again.

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  • By DonnaFA Moderator

    Hi J Bel, you’re most welcome. No worries about your book ;-), it’s written from the heart and we’re always here to listen.

    That is a very difficult place to be in, needing the support of your family, and not wanting to burden your mom’s heart. I’m wondering if your parents have a support system? Support for Parents of Young Adults Living With MS speaks to people in the same unique position, concerned parents of independent children who are not caretakers. It may help them to have an outlet.

    Until and even after you feel it’s okay to share with your parents, we’re here for you. – Warmly, Donna (MultipleSclerosis.net team)

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  • By J Bel

    Hi Donna, thanks for your reply. Unfortunately, my parents don’t have a great support system. My dad is what I would consider a “normal” person. Worked all his life, now retired, always on the move. Nothing really gets to him. In great health, walks and lifts weights every day. My mom, however, has always had depression and anxiety. She doesn’t work, hasn’t for years, has very little social support, unless you include a few friends on Facebook. I’ve always felt like I was the one who raised her. But, I love her, she’s my mom, but can be very difficult to deal with at times. To change the subject, she had a mammogram the other day and they found something of concern she needs to go back for an ultrasound for. This hasn’t helped my stress level. Every day I am getting more stressed out and noticing more symptoms. I have to get up at least twice a night to pee, I can’t sleep at all because of the pain, now tonight what really worries me is that I was watching TV and noticed the screen jumping up and down slightly. It started to make me nauseous. My fiance said the screen is fine. Thinking about going to my eye doctor because my regular doctor and I don’t get along. We don’t like each other and it’s a long story, but I’m not expecting much out of her. She doesn’t even believe I have chronic pain. Once again, I just had to get this out. This is a scary time I’m facing right now.

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  • By DonnaFA Moderator

    Hi J Bel, please do share that link with them, it may ease their burden in being able to talk to peers whose children also have MS.

    I wonder if perhaps you would feel more confident in getting the MRI if you had someone in whom you had some confidence and who you respected. Please check out How Do I Find A Doctor? Help Is Here! for information on finding the best doctor for you.

    You have to be carrying an incredible load of stress and anxiety which is never healthy, and could exacerbate your symptoms. I understand the fear, much of what we fear is what we don’t know. Your mom must be having a tough time too. That might make it a perfect time for a chat of what you fear you’re facing, and then being able to face it together and support each other through whatever comes.

    I would like to share a little story with you, that actually happened today. My two boys are in their second week back to school, and I have developed a miserable end of summer cold. An old friend came over and we were chatting. She said that I always get a cold within the first two weeks of the boys going back to school. I was really kind of surprised. I take note of my fiance’s patterns, I take note of my children’s patterns. I know the rhythms of their bodies and how to best care for them when they are under the weather. And here is this body that I have inhabited all these years, and I didn’t even recognize my own patterns. I tend to ignore the necessity of taking care of me because I am so busy taking care of them. It made me think that old saying is true, to take the best care of those we love, we first must take care of ourselves.

    We’ll be thinking of your mom and sending wishes for good news for your family. And as always, we’re here to offer information , support or just to listen. – Warmly, Donna (MultipleSclerosis.net team)

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  • By RetiredNavy

    Hi. I suffered through a hoerible car crash in my youth and also had one really bad jump at airborme school, which nearly killed me when I smashed my head on the ground. Fast forward through 21 years of active dutyand a tour in Iraq and was told by several docs that my cervical spine in such terrible condition that I was one bad bump or fall away from being completely paralyzed. So of course I elected to undergo a 5 and 1/2 emergency neck surgery. Had 3 discs replaced, bones shaved and now have a titanium plate with 4 screws holding everything in place. My problem: besides my neck condition, I also had w herniated discs, L4 and L5. No operation on those yet and probably won’t, spirits willing. BUT over the years I’ve noticed a slowly increasing feeling of clumsiness on my entire right side, to the point where I have uncontrollable tremors in my right hand, nut usually most noticeable when I try to eat with chopsticks or a spoon, to eat soup (have a Korean wife). In addition, I have had an almost constant felling of heaviness, numbness, tingling and burning in my right foot. I’ve tried NSAIDs, steroid injections, fentanyl, oxycontin, alcohol, – basically everything. Finally had a visit with a neurologist and he prescribed gabapentin and baclofen, which, Holy cow, has so far cleared up the burning and tingling in my right foot. What a relief!

    My question (sorry for the rambling intro) – from what I’ve described so far, are my spinal cord related history and present condition taken together indicative of a latent or masked over case of Muliple Sclerosis? Even as I use my right thumb now to type on this Android cell phone, I can sense a slight tremoring. I’m a bit scared and of course, have to wonder if I should request an MRI of my brain. Can anyone give me their opinion? Thanks!

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  • By Erin Rush Moderator

    Hi RetiredNavy! I am so sorry for the pain and health issues you have been dealing with. We are unable to offer medical advice or diagnoses online, for your safety. I would be interested to know what diagnosis your neurologist gave you. It sounds like you have enough symptoms to warrant another visit to the physician. Don’t hesitate to be “the squeaky wheel”, as I call it. No one knows your body as well as you do and if you know something is wrong, then you should get it checked out.

    Thanks for taking the time to share here and for your service to our country. We’re glad to have you here!

    Best, Erin, MultipleSclerosis.net Team Member.

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