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Waiting on MRI - Suspected MS

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    Waiting on MRI - Suspected MS

    Hello MSW!! I have finally slowed down after having binged on MS information and blogs the last few weeks. It is good to read about people I can actually relate to and understand some of these weird symptoms!!! At the moment I'm waiting on insurance approval for a brain MRI, with and without contrast, "for suspected MS".

    This is not a suprise to me. I have been suspecting MS since a period of odd symptoms last year. And I am experiencing syptoms again that started two months ago. My father also has MS. (Not sure how bad it affects him, lost touch for a good many years)

    I saw my PCP two weeks ago and explained my current symtoms. He said if the blood and urinanaylsis came back clean, he would order a brain MRI. Most likely it is something neurological. The one thing that came to mind, based on the symptoms and being a 25 year old Female, was Multiple Sclerosis. And then I told him my father has it too. (It is surreal to actually hear "Multiple Sclerosis" from a doctor!)

    Results came back clean. Now I am impatiently awaiting MRI. I just want to finally have an official diagnosis! Of course there is always the possibility of not finding lesions. Most people would think thats good, but that leaves me still in limbo.

    I want to document my experience a little bit (okay a lot) before I forget or struggle to remember many details, so that is below. Really hoping to have answers, and will be updating as I go through testing, which may or may not take a while.

    Thanks to you all for this great community and allowing me to join and post as one of many In Limbo!


    Book of Symptoms Below:

    For anyone curious but mostly so I don't forget, I am writing as much as I can remember about ALL my symptoms! I understand that not all symptoms may have anything to do with MS, IF that is what is going on, but will be going over everything I remember that has gone on that is not normal!

    Summer/Fall?? 2015
    I was dealing with a lot of stress at the time so that could have been all this was.(first roommates, newly married, and Stay-at-home mom of 1.5 year old)
    Chest tightness -hard to breathe
    Heart skipped a beat a LOT especially when stressed more - (had chest xray and echocardiogram normal)
    Fatigue
    Heavy weak legs/numbness/pain


    Summer 2018
    Daughter was 6 months old, decided not to go back to work and stay at home again, with both kids, after working for the prior 2 years.

    Last year during the summer, I lost most of the feeling in both legs, had problems with balance, and had severe low back pain, which are the symptoms that took priority. Doctor ordered lumbar MRI, only showed minor disc bulging and a true cause was not found.

    I also had fatigue, tighness and pain in my legs, heat intolerance, and cognitive problems. Most symptoms went away after a few months. I finally recovered from most of the leg numbness and pain after some PT and continuing stretches at home.

    May have no relevance but nonetheless.... I had kidney stones as well last year. First sign May 2018 was blood in urine. Then nausea and abdominal bloating, then flank and back pain, pain brought me to the ER in August. Stones were finally removed in December. 80% Calcium Phosphate 20% Calcium Oxylate. Not sure why I got them, I eat fairly healthy and am a healthy weight a bit on the skinny side, dont drink, dont smoke, don't drink soda.


    Mid-May 2019
    Started out with Fatigue.
    Trouble falling asleep.
    Tired the same amount when i wake up from sleep or trying to take a nap.

    My legs tingle all the time, muscles feel weak and tight, and hurt. Have to focus on walking.

    I am very forgetful! I will forget and leave the milk out, or forget what I was saying, or just feel like I can't think, or can't think of certain words.

    NEW. I had urinary incontinence for a week or so. Leaked urine down my leg when I didn't even know I needed to go. Or feel the sudden urge and didn't make it in time. Or sit and pee a little bit at a time over and over for several minutes. And the past 2 months, I have to pee probably 8ish times a day, sometimes even more. I used to go only about 3 times most days. Luckily I'm at home so I'm close to the bathroom.

    The hot days we've had here have made me feel exhausted and feel all the symptoms more, especially fatigue!! I feel like I ran a marathon, not walked 10 feet. And cooling off with the hose i feel a bit better.

    My eyes have been a little blury even with my glasses, and have been hurting if I look up, down, left, or right.

    Migraines have been worse, especially worse in reguards to noise amplification, and light sensitivity.

    Tinnitis has been worse, ringing louder than usual. Even can hear it when someones watching TV, or the kids are being loud.

    New. Feeling something cold, like the hose dripping (on a deep well so its pretty cold), causes me to feel a deep shooting pain up the associated limb.

    New. I have moments where I will randomly just tear up. I don't feel sad, and it will be really random. Its like my face and only my face thinks I'm sad. Then it's just gone. Really freaky. I definately am not sad. Not sure if I have this with any other emotions but its pretty obvious to tell with sad, when I randomly start tearing up.

    Most of these things, but not all, I deal with all the time, just not as bad, especially after last year.
    Thanks to anyone that read through this entire post!!! It ended up wayyyyy longer than I expected. I did edit, but I'm sure there are typo/grammar errors, my appologies hopefully it doesn't bother anyone too much!

    #2
    Hello Forgetful

    Welcome!

    You did fine with your symptom log, and describing your experiences. Thanks for sharing with us.

    Sorry that you have so many issues to deal with, though.

    Good luck with your MRI, and the process of finding out the cause of your symptoms.

    Keep us informed with updates. Thanks!

    Also, feel free to come here to vent your frustrations, if you need to.

    Wishing you peace and patience as you move forward.

    Take Care
    PPMS for 22 years (dx 1998)
    ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

    Comment


      #3
      Hi KoKo!

      It is good to at least write it down and get it all out there! I'm trying to be more patient, and just focus on doing what I can do each day!

      I'm looking forward to finally getting the MRI and will keep updating as I find out more!

      Thank you for the warm welcome!

      Comment


        #4
        Originally posted by Forgetful View Post
        I'm trying to be more patient, and just focus on doing what I can do each day!
        Sounds like a very good coping strategy, Forgetful.

        Originally posted by Forgetful View Post
        I'm looking forward to finally getting the MRI and will keep updating as I find out more!
        Good luck and we'll be looking forward to your updates!

        Take Care
        PPMS for 22 years (dx 1998)
        ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

        Comment


          #5
          Good symptom log. It sounds like you have shared your symptoms with your PCP. I hope that you will also pursue an appointment with a neurologist, or even and MS Specialist. Your PCP can give you a referral.

          MS can be difficult to diagnose. There is no definitive test that identifies it for sure. The McDonald Criteria is a standard way that doctors look to in order to diagnose it. You can google it.

          Your stress could be a cause of some of these symptoms. It could also be a trigger for your MS symptoms. Stress often exacerbates MS symptoms. Reversely, MS can create additional anxiety, not only about MS-related symptoms, but in just making the normalities of "life" more difficult,anxious-ridden and difficult to cope with.

          As I read through your symptoms, it appears that they could be MS. But, many illness mimic MS, so they could also be caused by a multitude of other things. Another thing to consider googling: differential diagnosis MS . That can give you a list of the many diseases that doctors also consider when looking at symptoms that could be MS.

          I wish for you a quick and accurate diagnosis. Keep us posted!
          ~ Faith
          MSWorld Volunteer -- Moderator since JUN2012
          (now a Mimibug)

          Symptoms began in JAN02
          - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
          - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
          .

          - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
          - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

          Comment


            #6
            Hi Mamabug
            Thanks for the reply!

            I know it's important to see a neurologist. I'm wondering if it is something I should pursue after MRI so the results can be discussed, or before?

            I've stayed pretty familiar with the McDonald Criteria after my bout of symptoms last year. I will definately discuss differential diagnosis at my next appointment, as I know even with MRI there are many things to rule out before diagnosis and many things that act like MS.

            Yes stress has definately been an influence! Migraines especially are likely just from the added stress!

            Thank you! I am hoping for that as well!

            Comment


              #7
              Originally posted by Forgetful View Post
              I know it's important to see a neurologist. I'm wondering if it is something I should pursue after MRI so the results can be discussed, or before?
              It likely makes sense to wait until after you receive your MRI results.

              I started with a general neurologist, but, after 5 years, switched to an MS specialist. A general neurologist needs to be fairly knowledgeable about so many illnesses. An MS specialist gets to specialize. I'm glad I made the switch. She is so much more knowledgeable.
              ~ Faith
              MSWorld Volunteer -- Moderator since JUN2012
              (now a Mimibug)

              Symptoms began in JAN02
              - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
              - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
              .

              - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
              - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

              Comment


                #8
                I was thinking, at this point, it makes sense to wait.
                I have been looking and only found 3 neuros locally that take my insurance. I am lucky to be only an hour drive from OHSU though, so I will see if I can get a referral to their MS Center.

                Thanks!

                Comment


                  #9
                  Originally posted by Forgetful View Post
                  I was thinking, at this point, it makes sense to wait.
                  I have been looking and only found 3 neuros locally that take my insurance. I am lucky to be only an hour drive from OHSU though, so I will see if I can get a referral to their MS Center.

                  Thanks!
                  Forgetful

                  My neurologist is not an MS specialist, per se, but does refer his MS patients to an MS Center for second opinions, follow-ups, treatment recommendations, services, etc.

                  I've been to the Cleveland Clinic Mellen Center for MS several times. The first time was for confirmation of the MS 'type' classification of PPMS.

                  In any case, good luck, and wishing you the best, Forgetful.

                  Take Care
                  PPMS for 22 years (dx 1998)
                  ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

                  Comment


                    #10
                    MRI was just approved and I have it scheduled for Monday!

                    I'm excited, as odd as that sounds. But I'm ready to have some answers.

                    Depending on the results I will try to get referred to the MS Center as they definately are more knowledgeable.

                    Comment


                      #11
                      Originally posted by Forgetful View Post
                      MRI was just approved and I have it scheduled for Monday!

                      I'm excited, as odd as that sounds. But I'm ready to have some answers.

                      Depending on the results I will try to get referred to the MS Center as they definately are more knowledgeable.
                      Thanks for letting us know. No; it doesn't sound odd to me. I was actually glad to get an MS dx. It didn't change the fact that I had symptoms; it simply gave me a reason and a way to treat my illness. I could now be more proactive instead of just reactive.

                      I've always been glad I made the switch to an MS specialist. I wish that I hadn't waited so long.
                      ~ Faith
                      MSWorld Volunteer -- Moderator since JUN2012
                      (now a Mimibug)

                      Symptoms began in JAN02
                      - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
                      - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
                      .

                      - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
                      - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

                      Comment


                        #12
                        Originally posted by Forgetful View Post
                        MRI was just approved and I have it scheduled for Monday!

                        I'm excited, as odd as that sounds. But I'm ready to have some answers.

                        Depending on the results I will try to get referred to the MS Center as they definately are more knowledgeable.
                        Forgetful

                        Good for you that the MRI was approved!

                        Wishing you the best on Monday.

                        Take Care
                        PPMS for 22 years (dx 1998)
                        ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

                        Comment


                          #13
                          Glad that your MRIs were approved. Lots of luck to you. I hope you are able to get answers one way or another.
                          Kathy
                          DX 01/06, currently on Tysabri

                          Comment


                            #14
                            Originally posted by Mamabug View Post
                            Thanks for letting us know. No; it doesn't sound odd to me. I was actually glad to get an MS dx. It didn't change the fact that I had symptoms; it simply gave me a reason and a way to treat my illness. I could now be more proactive instead of just reactive.
                            I agree with that! I will be relieved to have an official diagnosis, MS or otherwise.

                            And Thank you KoKo and pennstater!

                            Comment


                              #15
                              I had my MRI Monday and the results came back normal. No sign of MS. I was upset at first about not having answers, but I know it's great news.

                              This afternoon I went back to my doctor and I will be going on some anxiety/depression medication. I really didn't think I was depressed, but my husband brought up a lot of things and I had a good conversation with my doctor.

                              I'm starting to piece together things in my head, and it's kind of making sense. I just want to feel like myself again and I hope this works! I don't think I need to get into the details much.

                              Thank you for the encouragement and support! You guys have a great community here and I appreciate being able to be part of it and I have learned a lot! For now I am just going to work towards getting better.

                              Comment

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