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    #16
    it's been a while...time for an update that basically isn't an update

    Hello all,

    I hope you are all doing well and staying healthy in this storm called COVID-19.

    I had my lumbar puncture which came back clear. So far that means I've had:

    Blood work that came back fine.

    Brain MRI that came back with lesions not typical for MS, but with physical deficits noted by Neurologist, MS cannot be excluded.

    Lumbar Puncture that came back normal. (Lumbar was done before MRI/spine after a discussion with my Neurologist)

    What this means for me now is that as soon as it is clear for me to do so, I will have the MRI/spine done and if that comes back normal or inconclusive I will be seeing an MS specialist at IU.

    In the meantime, things calmed down for a bit and a lot of my symptoms either died off or calmed down to a much milder level of discomfort.

    This past week has seen most of them ramp up again including a newer sensation of repeated electrical shocks in my feet and left hand. The muscle weakness is returning to full strength as well.

    As far as my eyesight: I don't know whether the first surgeon was competent or not. The second surgeon did feel like the cataract surgery was done too soon, BUT it did enable me to have the floater surgeries which he would not have done had I not had cataract surgery already(getting rid of the floaters was AMAZING and I am glad to have done it.)

    Having said that, the double vision and blurriness is what SENT me to the specialists and was not an after-effect of the surgeries. The loss of night vision was the only after-effect.

    It's funny because I remember when I was trying to figure out what was wrong with me 7 years ago and they were testing for all sorts of things, I was told it might take years to get a dx. Within 6 months I was dx-ed with Fibromyalgia and started on meds that made a huge difference in my life.

    I guess I expected the same thing here because of that situation. It is just so hard to wrap my head around the fact that something that has changed my life entirely could remain in hiding for so long before we know what is causing it.

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      #17
      Originally posted by MakerMom View Post
      I had my lumbar puncture which came back clear. So far that means I've had:

      Blood work that came back fine.

      Brain MRI that came back with lesions not typical for MS, but with physical deficits noted by Neurologist, MS cannot be excluded.

      Lumbar Puncture that came back normal. (Lumbar was done before MRI/spine after a discussion with my Neurologist)

      What this means for me now is that as soon as it is clear for me to do so, I will have the MRI/spine done and if that comes back normal or inconclusive I will be seeing an MS specialist at IU.
      Looks like there are still some diagnostic options left for you to pursue.

      Originally posted by MakerMom View Post
      It is just so hard to wrap my head around the fact that something that has changed my life entirely could remain in hiding for so long before we know what is causing it.
      Well said, MakerMom.

      Thanks for letting us know what's been going on.

      Please continue to do so. Thanks!

      Your experience is helpful to other members as well.

      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


        #18
        What this means for me now is that as soon as it is clear for me to do so, I will have the MRI/spine done and if that comes back normal or inconclusive I will be seeing an MS specialist at IU.
        Why? If you spine MRI comes back normal you do not have any testing indicating MS. Without testing that indicates MS a diagnosis will not be given. A Multiple Sclerosis Specialist can be difficult to get into especially without any testing indicating MS. The Neurology Practice I go to doesn't even accept new patients without a Doctors referral.

        Your brain MRI has lesions not indicative for MS. The lesions you do have can be due to age, your migraines or Fibro.

        Many things can cause double or blurry vision including general vision problems;

        https://www.eyeworld.org/article-dou...uble--diplopia

        https://stanfordhealthcare.org/medic...on/causes.html

        Eye floaters are, for the most part, considered normal -- unless there is a (diagnosed) serious cause. I have lived with floaters since I was a kid -- mine are normal. My daughter has also experienced floaters and they are normal. Eye floaters are not caused by Multiple Sclerosis.

        If your cataracts were not "ready" (large) to be removed then the eye surgeon should not have removed them. I have (both eyes) congenital cataracts (born with them) and I am almost 59 years old. I tried to find an eye surgeon that would remove them when I was in my late 20s - mid 30s. As each one told me they would not do the surgery I finally decided I was putting my own health at risk by continuing to find that "one" surgeon who would perform the surgery. I am so glad I did not have cataract surgery, there are many risks to it regardless of age.

        been to ER twice for concerns of heart attack (banded pressure around my chest and arms) that were diagnosed as panic attacks
        Have you been to the Dr. to see about having your anxiety/panic attacks treated? If not I would suggest doing so. Anxiety/panic attacks can cause body wide physical symptoms. If treated you might find an improvement with symptoms.
        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

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          #19
          I appreciate the kindness I have been shown by most, but I think that it may be time for me to say goodbye.

          I still hope I am misunderstanding this poster's tone and intention but every response to me leaves me feeling angry, belittled and as though the poster thinks I am quite stupid. I almost didn't come back and post my last followup for those very reasons but thought I would give it one more shot.

          I have faced disbelief countless times when people hear that I have Fibro. I have even had a doctor look me in the eyes and say he doesn't believe in it at all, so I have had plenty of time to get used to that, but I really thought that a forum like this would be different and show nothing but love and support. I just don't feel that it's healthy to continue to post someplace when as soon as you hit send, you start waiting for the debate you know is going to come out of it.

          I am not trying to start a battle with this poster, but I do hope by giving one last response that the poster might look at how they address people and stop and think about how their words come across to others




          Originally posted by SNOOPY View Post
          Why? If you spine MRI comes back normal you do not have any testing indicating MS. Without testing that indicates MS a diagnosis will not be given. A Multiple Sclerosis Specialist can be difficult to get into especially without any testing indicating MS. The Neurology Practice I go to doesn't even accept new patients without a Doctors referral.

          Your brain MRI has lesions not indicative for MS. The lesions you do have can be due to age, your migraines or Fibro.

          Why??? Unless you are a doctor and have seen my MRI, how do you know what they are or are not indicative of? I obviously WILL have a doctor's referral to an MS specialist as my current neurologist is concerned with my Neurological testing and has stated that there is definitely something wrong with me.

          I guess maybe I'm a little confused when doctors tell me this is going to be a long journey and that things can change from one scan to the next why you are so certain that I should just stop after an MRI/Spine and accept that my symptoms are just all in my head?


          Many things can cause double or blurry vision including general vision problems;

          https://www.eyeworld.org/article-dou...uble--diplopia

          https://stanfordhealthcare.org/medic...on/causes.html

          I am aware of this. I am also aware that it is ALSO often one of the first symptoms of MS.

          Eye floaters are, for the most part, considered normal -- unless there is a (diagnosed) serious cause. I have lived with floaters since I was a kid -- mine are normal. My daughter has also experienced floaters and they are normal. Eye floaters are not caused by Multiple Sclerosis.

          AGAIN, I am aware of this. But again you assume to know my situation and make comments arguing my statements. My floaters were very large and causing major issues. The doctor who removed them did so for that reason and the result of having them removed was amazing. I never claimed that my floaters were a symptom of MS. You read that into my words all on your own.

          If your cataracts were not "ready" (large) to be removed then the eye surgeon should not have removed them. I have (both eyes) congenital cataracts (born with them) and I am almost 59 years old. I tried to find an eye surgeon that would remove them when I was in my late 20s - mid 30s. As each one told me they would not do the surgery I finally decided I was putting my own health at risk by continuing to find that "one" surgeon who would perform the surgery. I am so glad I did not have cataract surgery, there are many risks to it regardless of age.

          I don't even know how to respond. Honestly, the first thought that came to my mind was "Well, DUH!" Hind sight is 20/20 (even though my vision is not). I trusted a doctor I should not have trusted but I will restate this again: the vision problems that *MIGHT* be MS related were there before the surgery and remain after the surgery. Yes, they might not have anything to do with MS at all, but they are a possible symptom and three doctors have all advised me that in the grand scheme of things....they matter.



          Have you been to the Dr. to see about having your anxiety/panic attacks treated? If not I would suggest doing so. Anxiety/panic attacks can cause body wide physical symptoms. If treated you might find an improvement with symptoms.
          If I can repeat myself...again, I know this. I had two panic attacks over the course of a summer that included four separate eye surgeries. I am not overly prone to panic or anxiety.

          You know, the way I look at it is like this. I DON'T WANT to have MS. No one does. But I also don't WANT to keep having undiagnosed symptoms that are making my life quite miserable. I WANT answers. I DON'T WANT to have to over explain things to people. I WANTED to be a part of a community that uplifts and encouraged and shares. Darn it, maybe I even WANTED to hear, "Yeah, I had all that too and it ended up not being MS but something much easier to deal with."

          I didn't want to feel foolish or like I am forced to defend every statement I make just because someone believes that they know me or the things I am going through. I've spent years doing that already with Fibro and the thought scares me out of my mind that people might look at me the same way now when I KNOW that something is not right.

          Look, I'm sorry if I have you pegged wrong, but maybe you might stop and think about the way you respond to others. I know that right now I personally feel rotten because of the continued way you have responded to me.

          Comment


            #20
            Dear MakerMom,

            You have every right to express yourself and feel the way you do. We all need to practice compassion for those in "limbo" as we all have been there at one point. All of use want answers, but unfortunately, answers are slow to come especially since MS is such a complex disease and sometimes not so easy to diagnose.

            I know and understand completely as I had to wait 10 years for a definitive diagnose!
            Please reconsider staying away in the long run. We will want to hear of further developments from you and in turn, help you on this journey as we share ours.

            Be well and best wishes
            1st sx '89 Dx '99 w/RRMS - SP since 2010
            Administrator Message Boards/Moderator

            Comment


              #21
              Originally posted by MakerMom View Post
              It is just so hard to wrap my head around the fact that something that has changed my life entirely could remain in hiding for so long before we know what is causing it.
              I know, right?!

              It took almost two years, many, many tests (including 7 MRI's), lots of possible diagnoses ruled out, two "probable" diagnoses that turned out wrong, a two week trip with multiple daily appointments to Mayo Clinic in Rochester, MN (no definite diagnosis following that), etc before I was finally diagnosed.

              During that time, my world was turned upside down and I was very very ill with varied and unexplainable symptoms.

              Hang in there. A diagnosis is often elusive because lots of things "look like MS". It is not unusual for MS to be difficult to diagnose.
              ~ 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.

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