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  • hopeful23

    Hello...

    I am a very active mom of 3 little ones and a wife of almost 15 years. I Was fine just fine until December 29th when I woke up with double vision (only when looking left). A trip to urgent care thinking I’ll get a zpack or something, eventually led me to the local ER for a series of tests. I felt fine other than the vision thing that I could’ve just patched one eye and continued my day.  A clean CT and I was on my way. Nope. Needed an MRI. The MRI was abnormal. MS lesions they said and more tests were needed. I don’t go to the doctor. I’m not  medicine person. Now, after a spinal MRI and a LP here I am....

    I still feel fine I am strong, balanced and clear headed.  Is there another MSer out there like me? I’m so confused and now I don’t know what to trust. I thought I was fine but my results say different. I feel like I’ve been duped. Or am I so pig headed that I’m ignoring myself? I have no idea. So I wait for my lp results for the band thing and  I worry about what the heck they will medicate me with. Will I be functional? Will it abuse my immune system (I have 3 kids and they get sick so not good)?

    Just venting to someone who might understand this situation . 

  • MS_Navigators

    Hi Hopeful23,

    Welcome!  Some of your questions are impossible to answer- MS is incredibly unpredeictable. I know a new diagnosis is scary, we're here for you! If you have a moment, give us a call- we would love to provide information and support.  1 800 344 4867.

    Jess, MS Navigator

  • hopeful23
    Thank you! I will call today.
  • Chrissyny
    ✌🏼❀️😊 🌻
    so glad that you didn’t ignore first symptoms. Earlier your find out things the earlier you can educate yourself and move forward.
    Possibly a second opinion might definitely answer more of your questions.
    You deserve it πŸ‘πŸ‘πŸ‘πŸ‘
    take one thing at a time.
     Take advantage of the MS society website and the phone numbers and all the resources that they have, it pay off for you, excellent tool!✌🏼
    Hang in there and take one thing at a time 🌻
    ❀️😊✌🏼❀️😊✌🏼😊❀️😊✌🏼❀️😊✌🏼❀️✌🏼❀️😊✌🏼❀️✌🏼




     
  • hopeful23
    Thank you!
  • golgotha
    I'm one of those semi-rare males with MS, so go ahead and apply all of those male stereotypes about being focused on problem solving, etc. :)

    But trust me when I say I know what you're going through. I was diagnosed at age 27, a breadwinner with 4 kids, 2 in grade school and 2 before school-age. The diagnosis is a mind warp, that's for sure. Traditional wisdom says it takes a person 2 years to fully wrap our head around it.

    Is there another MSer out there like me?


    Unfortunately, quite a few! :)

    Or am I so pig headed that I’m ignoring myself?


    I gather you haven't been officially diagnosed, true? If not, hope that it's not MS. There are some other diseases/problems that can mimic MS, so let's hope it's one of those. If it's MS, then I'm sad to say welcome to our exclusive club.

    I wrote a bit in my MS profile about the tactic I used for years of "hiding" and sort of pretending/ignoring the fact I had MS -- and the plusses and minuses of that strategy. (That "My MS Story" is a nightmare to read because the site makes it into one "wall" of text without my paragraph breaks. :(

    I worry about what the heck they will medicate me with.


    I know it's absurd and seemingly insensitive for me to say, but try not to worry -- seriously. Stress can exacerbate MS symptoms.

    If you have MS (and again, I'm not sure you've been "officially" diagnosed) your neurologist (try to get a neurologist who has experience with MS; not all do) will likely want to put you on a "disease modifying therapy" drug (DMT). If you look for my post at the bottom of this thread/conversation you'll find a lot of information about the different DMTs. Reading and watching some of those videos will likely help with some of the anxiety you're feeling. And the last link in that post -- the "I highly recommend them" link -- I'm willing to bet will help inform you and realize MS is not as scary as the initial diagnosis makes you think it is.

    Will I be functional?


    Sadly, no one can predict the course of your disease. It could be "easy" or it could be a "nightmare." There are some indicators based on the age you are diagnosed, the type of symptoms in that first diagnosis, the frequency of attacks -- those sorts of variables -- but even those kinds of analysis are a crap shoot and are not certain. It's a roll of the dice that no one can predict.

    Since the above is reality what can you do? Be happy and be healthy -- seriously, that's about all we can do. Like it or not, you just got a big push to set an example for your kids and to lead a healthy life.

    Will it abuse my immune system (I have 3 kids and they get sick so not good)?


    The basic strategy of DMT (most? all?) is to suppress the immune system. So yes, you'll want to avoid everything from cuts to colds. Also things like a flu shot you should pay attention to what kind of shot it is (that video link I mentioned will have advice about that). But don't worry, getting a cold while on an immuno-suppressant DMT is not a death sentence; it just means you'll have to pay more attention to your health and getting well.

    Just venting to someone who might understand this situation


    LOL -- 99.9% of us have been there. Trust me, when you stop ranting and crying and go through the various stages of grief (several times for me!:) you'll realize that crying is no fun and that life goes on, so you might as well smile and make the best of it.
  • hopeful23
    Ha! Thanks for this. No I’m not completely officially diagnosed.  I had the MRIs that point to MS. And I just did the LP last Friday. The 10 vials of blood a week before that. And tomorrow is my VEP et al tests.  No word on the LP yet. Blood work says there’s nothing wrong with me.   

    Thats my med history.  Tests tests and more tests. Tomorrow should be the last one.  I’m hoping it’s not MS. Like praying hoping lol 

    Thank you for answering so thouroughly and honestly. Maybe you can tell me if I have MS can I enjoy a summer BBQ filled with beer and heat? It’s one of my fav things and this deep freeze is making me miss it.  I know I know you have no answers. Lol just thought I’d ask. 

    Thanks again my friend. I appreciate it 😊
  • Stacy10
    Hey Hopeful,
      I enjoy BBQ and beer too. If it turns out you have MS, you may be more heat sensitive. Maybe not. I know a few who aren’t. There are a couple ways to deal with heat. I avoid the heat of the day. I seek shade. Direct sun seems to be a killer. I wet down my hair before I go out and wet it often. There are also cooling vests for the worst heat. I went tubing on a sweltering summer day and discovered as long as my butt was in cool water and I could submerge my hands and sprinkle myself with cold water, I did great. Swimming is nice too.
      You’ll figure it out. But I think you can look forward to summer cookouts. You just might have to be a little more creative.
  • hopeful23
    I am thrilled my summer won’t be ruined. I love summer. It’s 5 degrees outside right now. I am dying for some heat! I love the beach and flip flops. Yes!!!! Thank you!
  • klg-123
    Hello,
    My journey started the exact same way - blurry, double vision - I told myself that maybe I just needed new contacts. I could also cover one eye and see fine. I went to the eye doctor and tried to explain what I was experiencing and seeing. Luckily, he was patient. He consulted a book, called a colleague, and came up with a diagnosis - 6th nerve palsy. Its a nerve in the brain that controls the lateral movement of your eye. He said it usually resolves itself in a few weeks to a few months. He sent me for an MRI just to make sure there was no underlying serious cause. Well, the MRI was abnormal and there were lesions. He told me it suggested MS, but probably wasn't and to follow up with a neurologist ASAP. I did, and 2 more MRIs and a spinal tap later and I had a diagnosis of CIS, likely to be MS due to the number of lesions. And, he wanted me to start on a DMT right away. Like you, I felt fine. My vision was normal by the time I saw the neurologist a few weeks later, so I was having a hard time believing this. I found and MS specialist because I wanted to make sure this was real - I was in complete shock and almost didn't believe all of the evidence. The MS Specialist confirmed the diagnosis and agreed I should start meds right away, so I did. 
    I have been VERY lucky - I have been on Tecfidera since a month after my diagnosis and I have not had a relapse and I do not have any new lesions - it has been alomst 4 years now. My bloodwork is normal too. I get bloodwork and MRIs every 6 months. I do not get sick any more than I did before my diagnosis and being on a DMT. Also, I saw your question about summer BBQs - I have not had any issues with summer heat. 
    I don't know what will happen in the future and I think that was the hardest part for me - and still is. Even though I don't feel sick and I don't have symptoms regularly, I have MS and that is still very unreal to me (I have had some very mild tingling on a few ocassions, but docs said it was probably "residual" from old lesions since my scans are the same). Although I have accepted it and I can say it, I think I live partially in denial since I haven't had to change my life other than 2 pills a day and regular doctors appointments. Also, only a handful of people know about my diagnosis. I have not disclosed my diagnosis outside of my immediate family and a couple of friends - no one at work knows, my extended family doesn't know...
    It took me a good 8 months to calm down and go about life again. I read a lot (MS for Dummies was excellent as is the info from the MS Society) and came to this forum. Both helped me to understand my condition and that I am not alone. So, if nothing else, know that you are not alone.
    If you have any questions, please feel free to ask. Best of luck to you on your journey!
  • hopeful23
    Thank you so much! It’s so nice to hear that someone else is like me. Ha! I even thought of the eye patch thing. Ok so I guess I should stop thinking that my life is over. This really meant a lot to me. Thank you so much!
  • Crystal-S
    My first symptom was vision issues. I was 6 mos postpartum with our third boy and kicking toys across the floor. It was like holes in my vision, hard to describe. New baby had been going through a sleep regression since 3 months (which I had to google because my first 2 boys were great sleepers) and I thought I was just tired. I had a headache and felt tired/run down... but I wasn't sleeping well and was busy with 3 little kids. A few days later I was working out and couldn't bring my weights together. It was so weird...like being drunk uncoordinated but stone cold sober. That scared me and we called our ins 'ask a nurse' helpline for advice. They suggested ER. Better to be safe than sorry. We went the next day and was almost immediately diagnosed. MRI showed a 5mm enhancement. I was admitted to hospital for 5 days and given a steroid treatment. During my stay they ran tests...LP, bloodwork, spine MRI, etc. All confirmed MS. Apparently I had a bunch of old lesions. Most of which were in "quiet" parts of the brain which is why I hadn't experienced any symptoms prior. 
    It was a hard pill to swallow. I'm healthy... what!?! I was scared. The weeks following were hell. I had to quit nursing our son. 5 days in hospital and steroid ruined that.  I was recovering from the relapse, but emotionally a wreck about my future. What did all this mean?
    Fast forward to now.  As I write this...it's been almost 2 years and I'm finally wrapping my head around it. I postponed treatment to have one more baby and got a beautiful little girl. So I now have 4 beautiful babies (6, 4 1/2, 2 - all crazy boys and a fab lil girl who will turn 1 in a few days!) And MS. It's ok. It's been a roller coaster ride. Still is! I have 4 kids! I like my Drs- that's important. (MS specialist, GP, OB) I like them all, value their opinion and often bounce ideas off each and that has helped me. I had an MRI right after birth of baby girl...my first one since my diagnosis and it showed activity but I felt fine. Literally walking on the treadmill when dr called! I had just started copaxone and was nursing so decided to stick with it. Had another MRI 6 mos later, showed more progression and dr put her foot down. I weaned baby girl and started tysabri. Just got my 6th infusion a week ago. I feel good and am hopeful it's working. I have an MRI scheduled soon...on my 2 year anniversary to date, actually!  I'm anxious to see what it says. Hoping it'll be clear.
    Sorry to ramble...I guess I read your post and all the others who responded and could sooo relate. Been there. It's a bumpy ride and takes time to see that it's going to be ok. New normal, self - care...wait and see. Don't stress and worry about everything...all things I had to learn, am still learning and working on.
    One final thing, Tysabri was recommended by my dr because it's well tolerated, no major complaints of side effect from her patients, etc. And I'm currently JC neg, and I agree. It's been pretty easy so far. It's every 28 days and takes about 3 hrs...that's prob the biggest thing...I was healthy before and now I have a lot of appts. But I'm making it me time. Mama of 4 doesn't get much alone time so I watch a movie, relax and get my infusion. I have a cold as I write this but nothing serious. Littles bring every germ home from school and we're busy - out and about. Life goes on and I want to live it! It's my first cold in over 2 years though. I'm hoping  my immune system is not as strong on tysabri and isn't attacking itself anymore! My dr thought it best for me for that reason too. With littles around and not wanting me to be sick all the time. I've been healthy while taking it thus far. 
    Hang in there! Take it slow. Gather knowledge, resources and listen to your body. It's going to be ok. I know it's different for everybody but I wish someone had told me that so that's what inspired my to respond to your post. 
    I'm new to this site and still gathering info, resources, advice, connection, etc. I think I always will be...
    Good luck! 
  • hopeful23
    Congrats on your new little girl! That’s great news! I have two boys 8 and 3. My daughter is 10. It’s very reassuring hearing your story and I truly thank you. 
  • Chrissyny
    Little lady🌻🌻🌻🌻🌻🌻🌻🌻🌻your a beautiful caring mother.....thank for your story.....made me smile....smile..and smile again❀️✌🏼😊❀️✌🏼😊❀️✌🏼😊❀️✌🏼😊❀️✌🏼😊❀️✌🏼😊❀️✌🏼😊❀️✌🏼😊❀️✌🏼😊❀️✌🏼😊❀️
    MS has nothing on you✌🏼❀️😊✌🏼❀️😊✌🏼❀️😊✌🏼❀️😊
    youhave 4 little onesπŸ˜‰β€οΈπŸ˜‰β€οΈπŸ˜‰β€οΈπŸ˜‰soooooo blessed and I’m tickled pink just reading this🌻🌻🌻🌻🌻🌻🌻🌻🌻🌻🌻
    Blah blah blah to ms.  You have 4 πŸ‘ΆπŸ‘ΆπŸ‘ΆπŸ‘Άmuch bigger things ✌🏼🌻❀️✌🏼🌻❀️✌🏼🌻❀️✌🏼🌻❀️✌🏼🌻❀️✌🏼🌻❀️✌🏼🌻❀️✌🏼🌻❀️    πŸ˜‡
  • Avatar
    Congrats on your little baby girl.  Take care, get plenty of rest, and sleep.  I have been on Tysabri for four years and am JCV positive (not by much).  I have gotten worse and worse as the years go by and am at the point where I can't really do anything anymore.  This drives me crazy, especially when I used to be so active before.  I'm sure you will go through a lot of emotions in your MS journey.  Even now, after having MS for about 40 years, I have never reconciled myself with my having a SPMS diagnosis.  
  • anywhereoutofthisworld
    It's a difficult process & situation for anyone this Ms diagnosis. The questions and what ifs can drive anyone crazy. Don't get lost in all of it though. Stress can make Ms worse, so try and take 3 deep breaths and stay as calm when it gets to be too much. As for medication, I am on Tecfidera and so far so good as for as side effects. I understand your frusteration but I do believe we truly are warriors, those with Ms, we have to be.

    Where there is no struggle, there is no strength. Oprah Winfrey
    Read more at: https://www.brainyquote.com/topics/strength
    Where there is no struggle, there is no strength. - Oprah Winfrey
    Where there is no struggle, there is no strength. Oprah Winfrey
    Read more at: https://www.brainyquote.com/topics/strength