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Misdiagnosed with MS

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    #16
    Originally posted by GardeningMSer View Post
    Since 2000 my left leg has become a bit weaker but I can walk using forearm crutches

    I had both a brain and a lumbar MRI in August, the former showing no changes, the latter showing compressed disks near L3 and L4 and a fractured vertebra. There is no pain associated with this.

    Besides my weak left leg, I have bladder and bowel urgency.
    Is it possible that some of my MS symptoms are actually a result of the compressed disks and fractured vertebra?
    If this is the case it is possible your back problems are causing Neurological symptoms and very possibly not MS. Disk problems can and do cause Neurological symptoms but is not related to MS.

    My husband has had 2 back surgeries. The first (2008) was minimally invasive at L5. He recovered nicely. The second back surgery (2015) was more extensive ( laminectomy) and included L-3/4 and L-4/5. He has 2 Titanium Clips. He recovery nicely but range of motion is hindered a bit due to the Titanium Clips.

    The first back problem caused pain, foot drop, numbness in one foot, poor balance and leg weakness. The second back problem did not cause pain but did cause leg weakness (he could barely walk), very tired, poor balance.

    Both times his surgeon (Neuro-Surgeon) did surgery on an emergency basis as he was at a severe risk for being paralyzed. His surgeon and PCP kept asking if he had lost control of his bowels or bladder.

    I would suggest seeing a Spine-Surgeon or Spine Orthopedist to evaluate your back.
    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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      #17
      Originally posted by Tawanda View Post
      I

      For years I have heard that the MRI is the gold standard for MS diagnosis. Although I would have preferred almost any other disease except for maybe cancer (B-12 deficiency, pinched nerve, fibromyalgia, Lyme, etc. were all possibilities 15 years ago), I too am in the "I wish" club!
      Tawanda, I know I will more than likely repeat information you already know so I will apologize in advance

      Although the MRI is a large part of the diagnostic criteria I do not consider it the "gold standard" for diagnosing MS especially when discussing the possibility of a misdiagnosis. Many things can cause lesions and similar symptoms as those seen in MS.
      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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        #18
        Originally posted by SNOOPY View Post
        Tawanda, I know I will more than likely repeat information you already know so I will apologize in advance

        Although the MRI is a large part of the diagnostic criteria I do not consider it the "gold standard" for diagnosing MS especially when discussing the possibility of a misdiagnosis. Many things can cause lesions and similar symptoms as those seen in MS.
        Maybe I've repeated this a million times as well...that came from my MS Specialist, not me. I heard him state this at a "free" MS dinner at the Mariotte Hotel before he was my doctor. He was the note speaker. That was 15 years ago so I should ask him if he still believes it today...I'll get back to you guys!
        Tawanda
        ___________________________________________
        Diagnosed with Multiple Sclerosis 2004; First sign of trouble: 1994

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          #19
          Hi all! It is me again!

          I haven’t been on this site for awhile since I may not actually have MS. It has been an interesting journey over the past two months...one I am not sure I have the words to clearly express. People’s reactions have been varied....mostly reacting with statements like “aren’t you so excited”. In many ways, yes...of course...MS is a very bad disease that no one wants to have. But at the same time, with 4 of 5 neurologists saying I have MS, could this last doctor be wrong? Is Benign MS possible? If it is that, does it come back? Do they really even know?? I guess in some ways I feel at time I am left with more questions than answers. Other days, I don’t think about it at all.

          That said, articles state that about 20% of folks with MS are misdiagnosed. I have been just diagnosed with Fibromyalgia (instead of the MS), and since learning about that disease I do believe that this diagnosis is accurate. It too is not a good disease and people live off and on with chronic pain and fatigue and other symptoms similar to MS for a life time.

          The biggest challenge is my doctors. Some who don’t or aren’t initially accepting this new diagnosis. So, managing that is difficult and so far I have mostly avoided them. I have appointments coming up in the weeks ahead and the stress of conflicting diagnosises is sometime to much to manage.

          All and all, I am still struggling with symptoms and still not yet back to myself...so I am taking it day by day. I miss this board so much....I haven’t yet found anything similar for Fibromyalgia (but open to suggestions if anyone has any!)

          Thanks all! Will stop back again soon!

          Comment


            #20
            Thanks for getting back with us, MGM, and sharing your thoughts. I'm so sorry you are facing the unknown. Fibromyalgia can be as devastating as MS with similar symptoms.

            I found a site that can put you in touch with support groups in your area if you're interested. https://fibroandpain.org/support-groups Look up your state and will list a few areas that might be near you. I attended an MS support group for years when I was first diagnosed and it was so helpful to talk with others in person.

            Also, here's a link to an online support group - https://fibroandpain.org/fibromyalgi...rt-community-2

            I hope these help you on your journey, but know you are always welcomed here as well. You have been a part of our family for a long time and we will want to know how life is treating you
            1st sx '89 Dx '99 w/RRMS - SP since 2010
            Administrator Message Boards/Moderator

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              #21
              Misdiagnosed or just benign?

              Originally posted by Tawanda View Post
              I would love to hear what happened with people who were misdiagnosed! For instance, if all you really needed was a B-12 pill/shot, and you were misdiagnosed with MS for years, would you start creating your own MS symptoms? Suffer from depression? Quit your job? Like a reverse placebo (if that's a thing) effect or something. You could reverse it, too: misdiagnosed with a B-12 deficiency, but in reality you have MS??

              For years I have heard that the MRI is the gold standard for MS diagnosis. Although I would have preferred almost any other disease except for maybe cancer (B-12 deficiency, pinched nerve, fibromyalgia, Lyme, etc. were all possibilities 15 years ago), I too am in the "I wish" club!
              I was diagnosed in 2006. I have had migraines and probably fibromyalgia. A MS Specialist convinced me that I needed to go on disability, because I had too many lesions at my age. I had fatigue, vertigo, numbness in my hand, and overall weakness. Despite those, I worked and never used an assistive device. I was and am still physically active.

              I stopped taking a DMD a couple of years ago. (I know that is not advised, but I question if the side effects were worth it, in my case.) In my opinion, I have no signs of progression. It is just the same, where I have a few crappy days of have brain-fog, and increased tiredness.

              I believe I have benign MS, not as severe as the doctor told me. I may try to get another opinion.

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                #22
                Andy75,

                The term benign MS is controversial. Not all neuros believe in the term. Part of the problem is the definition relies on the EDSS score, which only really measures disability related to mobility.

                There were studies that followed those defined as benign at 10 years vs 20 years. I remember that for EDSS of 3, 50% were not benign at 20 years. I think for EDSS of 0 or 1 at 10 years, 20% were not at 20 years.

                I had wondered the same. In reality, I was fine for 13 years between 1st and 2nd relapses, no major impact on my life until the 20 year mark. Even now, EDSS is low. It is the invisible symptoms of fatigue, vertigo, cog fog, weakness that got me. As the fatigue worsened, the cog symptoms did as well.

                You may want to also discuss DMTs again with your neuros. There are so many choices now. You may find one with no side effects for you. As my neuro said, MS is mild til it's not.

                Hope your MS remains mild and has little impact on your life. Glad you are still working. Wishing you continued success.
                Kathy
                DX 01/06, currently on Tysabri

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