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    Introducing myself

    Hi all,

    I am a 53 year old mother of two, married for 36 years and just beginning the journey to diagnose whether or not I have MS.

    7 years ago I was diagnosed with Fibromyalgia. I have always been very proud to say I was able to continue working and was very good at my job (5 years at a hospital call center and 2 as a Medical Office Assistant).

    About a year ago my migraines began to come at a much faster frequency and I began to experience debilitating headaches/migraines that would start at the base of my head instead of on the side where all my migraines have always been. This always began and ended with bad neck pain and stiffness. My company only allows 4 call-ins a year without reprisal and I was close to reaching this for the first time ever, so I applied for, and received, intermittent fmla with my supervisor's help.

    This past May I went in to my eye doctor and told her my vision was inconsistent and sometimes blurry. During this exam we could not get my vision corrected to 20/20 and I realized I was seeing a slight double image.

    Fast forward to September: by now I had gone through double cataract surgery, double vitrectomy
    surgery (floater removal) and had been to ER twice for concerns of heart attack (banded pressure around my chest and arms) that were diagnosed as panic attacks. My vision is now worse than ever.

    I could no longer write for long periods of time, my vision was still blurring in and out, I could no longer drive at night and I was having anxiety attacks over all these new problems so after a very emotional discussion with my husband I ended up leaving my job and filing for disability.

    Since all this I have began to have a greater degree of vibration like feelings (fibro always caused my legs to do this and now my whole body is doing it), my vision sometimes has a reddish double image, and sometimes I see slight hallucinations.

    My hands, feet and scalp sometimes burn badly and my feet has felt like light bee stings, my muscles are often weak or heavy feeling as well as often feel stiff and tight. Suddenly the slightly painful electric shock from my head to my toes that I sometimes get woken up with at night have an ominous new meaning (could they be Lhermitte's Sign?)

    At my disability exam I was unable to walk on my heels or heel to toe and I discovered from my regular neurologist yearly report that he has me listed as having gait disturbances for 4 out of my 7 years of seeing him. I have only had one MRI that was done 7 years ago and it was clear.

    Earlier this week the right side of my face was both numb and burning feeling all day long. I have also had trouble swallowing on occasion and sometimes forget a common word when talking.

    I have been talking to another neurologist and am having a new MRI done in the next few weeks, but needless to say, I am very concerned and fearful of what it is going to show. Obviously Fibro and MS have many similarities but these new symptoms seem to belong to the MS side of things.

    I wanted to join a group that could help me through the upcoming testing and whatever outcomes it may show and my search led me here.

    Thank you for allowing me to join your group!

    #2
    Hello MakerMom

    Welcome!

    We're glad that you have reached out to us for support on your journey.

    When you have questions, we'll be happy to help, if we can.

    And if you just need to sort out your feelings, or need to vent, this is a good place for that also.

    Share the things you want to, when you want to.

    Take Care
    PPMS for 26 years (dx 1998)
    ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

    Comment


      #3
      Welcome MakerMom. Glad you found us.

      Good to hear that you will be getting a new MRI. I am sure you know that when you have a chronic illness it is easy to chalk everything up to that. It is great that you are advocating for yourself since some of your symptoms may have other causes.

      I am sure you know that some sound like MS. That being said, they can also have other causes and there are conditions that mimic MS.

      Have you had any blood work lately? Some vitamin deficiencies can also come into play, as well as thyroid and Lyme's disease.

      You may have this already, but a diagnosis of MS requires the McDonald criteria to be satisfied. Information on diagnosis can be found:
      https://www.nationalmssociety.org/Sy.../Diagnosing-MS

      Noone wants an MS diagnosis, but everyone wants answers. I hope thru testing and your new neurologist, you get them. Please keep us in the loop on your journey. Hope you feel better soon.
      Kathy
      DX 01/06, currently on Tysabri

      Comment


        #4
        Originally posted by MakerMom View Post
        Suddenly the slightly painful electric shock from my head to my toes that I sometimes get woken up with at night have an ominous new meaning (could they be Lhermitte's Sign?)
        Hello MakerMom and welcome to MSWorld.

        Lhermitte's sign is not exclusive to MS but when related to MS it is due to spinal cord lesions. Lhermtte's sign is when you bend your head down and experience abnormal sensations (electrical shock, buzzing/vibrations) from spine down.

        These sensations will only last seconds but can be repeated each time the head bends down. In all the years I have dealt with Lhermitte's I have never had it bother me at night or when laying down and Lhermitte's has never woken me up.

        Best wishes on your up coming testing.
        Diagnosed 1984
        “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

        Comment


          #5
          Originally posted by SNOOPY View Post
          Lhermitte's sign is not exclusive to MS but when related to MS it is due to spinal cord lesions. Lhermtte's sign is when you bend your head down and experience abnormal sensations (electrical shock, buzzing/vibrations) from spine down.

          These sensations will only last seconds but can be repeated each time the head bends down. In all the years I have dealt with Lhermitte's I have never had it bother me at night or when laying down and Lhermitte's has never woken me up.
          My experience with Lhermitte's is the same as SNOOPY's.

          When I bend my head down (chin to chest), I can get a buzzing/electric shock type feeling down my spine and then often going on down my legs.

          I have never experienced it while lying down at night.

          Take Care
          PPMS for 26 years (dx 1998)
          ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

          Comment


            #6
            Thank you all for your kind responses!

            It is a very scary time right now, not knowing for sure what these new symptoms mean. Are they new Fibro problems? MS? Something entirely different?

            I feel relieved to know that the electric shocks I have experienced are not Lhermitte's Sign. That and the facial numbness and burning have me worried the most. In my mind the rest can be attributed to illnesses or problems I have already been diagnosed with.

            I'm very sure everyone here knows the frustration and pain of trying to figure out what is going on with our bodies. Since May I have honestly thought I was losing my mind on more than one occasion.

            I have raged and cried many times, especially over my eye sight. I was all but promised that my vision would be so vastly improved that I may no longer even need my glasses. Instead, the opposite happened and I can no longer drive at night and many days battle double vision.

            I ask myself almost every day if these surgeries were needed at all or if the symptoms were strictly part of whatever is going on with me now? I wonder how skilled an ophthalmologist would or should be in knowing if symptoms like double vision are truly an "eye" problem or a "brain" problem?

            I had what I thought was an excellent surgeon for my cataract surgeries but ended up nearly arguing with him (and truly arguing with his nurse) that I was battling doubled, blurry vision as well as vision that kept decreasing with every visit. I kept being told that while yes, he could tell I was truly seeing double and my vision was obviously worsening, that no, it wasn't due to his surgeries because those were "perfect and healed nicely." I just still needed "time to heal" and my vision could improve "any day now."

            A second surgeon took out my floaters and for a brief amount of time, my daytime vision was amazing, but it didn't take long for the double vision to return. This surgeon pretty much informed me that at my age and the facts that my cataracts were tiny, I should probably have never had the first surgeries. He admitted to being at a lost as to why my vision was worsening instead of improving.

            Some days I feel like those first surgeries caused everything else that has followed.

            Comment


              #7
              Hi MakerMom

              Vision issues are scary. I can understand your fear and frustration, especially after having various surgeries.

              You don't need the added stress of wondering if you even should have had the surgeries done (unless you believe that malpractice is possible).

              It's good that you're sorting out these thoughts and feelings, and hopefully reducing some unnecessary stress.

              Wishing you a good day today, especially with your eyesight.

              Take Care
              PPMS for 26 years (dx 1998)
              ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

              Comment


                #8
                Welcome, MakerMom

                I'm glad you found us. I never feel very qualified to comment on symptoms and whether they are MS or not. All of us vary so much in how our symptoms present that it's really hard for me to know. MS is often difficult to dx and many other illnesses mimic MS; it's often necessary to rule out all kinds of other illnesses.

                We have some things in common. I'm also in my 50's (57) with two kids. My daughter is married and has two little boys, so I'm a proud Mimi.

                I hope your MRI will help sort out what's going on. Often other tests (blood tests, LP/spinal tap) may need to be done too. Your clinical history will also help your doctor to make a diagnosis. It's not unusual to develop more than one auto-immune disease.

                Please keep us informed!
                ~ 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


                  #9
                  Today is the day

                  Today is the day to finally get some answers (at least I am praying it is)!

                  I saw my gp yesterday and he ordered bloodwork and urinalysis. So far everything came back clear. I am still waiting for the spep and heavy metals work up.

                  I have My MRI and first visit with my new Neurologist today.

                  I know that there is a possibility that I come away still not knowing what is going on, but I live by faith and can only believe that the answers are close!

                  Comment


                    #10
                    Originally posted by Mamabug View Post

                    We have some things in common. I'm also in my 50's (57) with two kids. My daughter is married and has two little boys, so I'm a proud Mimi.
                    I have a precious grandson too! I thought being a mom was the best thing in the world....until I became a mamaw.💕

                    Comment


                      #11
                      Originally posted by MakerMom View Post
                      Today is the day to finally get some answers (at least I am praying it is)!

                      I saw my gp yesterday and he ordered bloodwork and urinalysis. So far everything came back clear. I am still waiting for the spep and heavy metals work up.

                      I have My MRI and first visit with my new Neurologist today.

                      I know that there is a possibility that I come away still not knowing what is going on, but I live by faith and can only believe that the answers are close!
                      Hello MakerMom

                      Hope you get some answers soon.

                      Let us know what you find out.

                      Wishing you all the best!

                      Take Care
                      PPMS for 26 years (dx 1998)
                      ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

                      Comment


                        #12
                        Still Uncertain?

                        Well, I guess there is still a whole lot of uncertainty even though we came close to dxing MS.

                        All bloodwork came back clear but we are going to do the ANA which was not ordered by my GP.

                        My MRI does show lesions, but they are not quite appearing as classic MS lesions. However, when my neurological symptoms are added in, (left sided weakness, balance issues/gait disturbances and brisk reflexes) he cannot in any way rule out that that they are NOT MS lesions at this point. If I understood correctly, the lesions could just be starting to develop?

                        He said that all my symptoms and neuro responses point to MS but we are still short on clinical proof.

                        Next up is a lumbar puncture.

                        Not quite the news I was hoping for because I was hoping for something more black or white (who doesn't?) but at least I know I am not losing my mind.

                        Comment


                          #13
                          MakerMom

                          The CSF analysis can provide some more important information.

                          Oligoclonal banding and elevated IgG Index are found in 90% of persons with MS.

                          Also, the other CSF findings can be used to rule out other diseases and disorders.

                          I had the LP, which was positive and confirmed the MS dx.

                          Take Care
                          PPMS for 26 years (dx 1998)
                          ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

                          Comment


                            #14
                            Thanks for keeping us posted. As I said earlier, I'm not very good at interpreting results (I'm not a science-y person at all!). Lumbar punctures are said to create bad headaches for the first day or so, especially if you are unable to lie still. I had one, years ago, but I was so horribly sick that I slept almost 24 hours following mine so I have very little memory of any of it.
                            ~ 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


                              #15
                              Hi MakerMom.

                              Did you have MRIs of both brain and spine? If you did not receive a spine MRI I would suggest talking to your Neurologist about having a spine MRI before doing a Lumbar Puncture. A Lumbar Puncture is usually the last test done. MS is a disease of the Central Nervous System(CNS) which includes the brain, optic nerves and spinal cord, lesions can and do show up anywhere within the CNS.

                              Brain lesions can be due to numerous causes, including but not limited to, migraines and fibromyalgia, and are not necessarily indicative of MS.

                              I was all but promised that my vision would be so vastly improved that I may no longer even need my glasses. Instead, the opposite happened and I can no longer drive at night and many days battle double vision.
                              Any Dr. that would make this claim would be suspect, in my opinion. The Drs. I have dealt with through the years would never make this kind of statement as there are no guarantees with surgery. I would suspect your vision problems would be more related to your eye surgeries rather than something like MS. However, I do not have a medical background.
                              Diagnosed 1984
                              “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

                              Comment

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