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Diagnosed but not really sure. Im not a doctor

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    Diagnosed but not really sure. Im not a doctor

    Hello all, I have Bilateral Internuclear ophthalmoplegia. They can only find one lesion on my MRI. They can NOT find the lesions causing the BINO in my brainstem. I have all the symptoms of MS. I have two Neurologist and one neuro opthamologist telling me I have MS. My CSF does NOT show the Oligoclonal bands. ALL my test come back negative.

    This all started when I had surgery five years ago on my right shoulder and my left leg was paralyzed after surgery and has never fully recovered. Now my body / muscles ache constantly and it seems like something new happens to me weekly. Ive had this BINO for more than 8 months...

    I ask because I am seeing my MS neuro and am wondering do I start medication? You would think THREE doctors telling me I have MS would be enough but for some reason I can't get on board. NO BANDS. The docs are calling me A-typical. Okay.

    People speak of Flare ups? when does it get better? Does it get better with Meds? I am just so tired and weak.

    One thing about the CSF and I dont know if it matters but the hospital screwed up and forgot to take blood when they did the tap. They then called me a week later to rush in to draw blood so they could send out my CSF for testing. So my spinal fluid sat around for a week somewhere before they figured out it needed to be sent out for the test. Is it still viable?

    IDK do I have MS?
    Thanks all!

    #2
    There is no single test, by it's self that can give a definite diagnosis of Multiple Sclerosis:

    At this time, there are no symptoms, physical findings or laboratory tests that can, by themselves, determine if a person has MS. Several strategies are used to determine if a person meets the long-established criteria for a diagnosis of MS, and to rule out other possible causes of whatever symptoms the person is experiencing. These strategies include a careful medical history (.pdf), a neurologic exam and various tests including magnetic resonance imaging (MRI), evoked potentials (EP) and spinal fluid analysis. http://www.nationalmssociety.org/Sym.../Diagnosing-MS
    My CSF does NOT show the Oligoclonal bands.
    Keeping in mind that no single test can 100% determine if someone has MS; Ninety (90) to ninety-five (95) percent of those who have MS and who had a Lumbar Puncture (LP) have a positive LP (o-bands).

    There are those who have a diagnosis of MS and either didn't have a LP or their LP was negative (no o-bands).

    ALL my test come back negative
    Well, that isn't exactly true, your MRI did show a lesion. What about your Neurological exam? How did that come out?

    They can NOT find the lesions causing the BINO in my brainstem.
    MRIs are a great diagnostic tool.

    What is important for you to understand is the MRI doesn't always match up to symptoms. A person can be doing fine and the MRI shows more and/or active lesions. A person could be having more symptoms/problems but the MRI doesn't show any changes from the previous one. Then there are time when the MRI does match up to how a person is doing/feeling.

    There is a saying --- treat the patient not the MRI.

    My MRI did not indicate a lesion that would account for my INO but it was determined by a Neuro Ophthalmologist that I have INO due to Multiple Sclerosis.

    People speak of Flare ups? when does it get better?
    It depends because those of us with MS will have different journeys with this disease. You should not and cannot compare yourself with another person with MS.

    Flare-ups have the same meaning as relapse, attack, exacerbation. An exacerbation can last several weeks but recovery can take longer. It is also possible to have permanent (residual) symptoms, only time will tell.

    I am just so tired and weak
    There are symptom management medications that might be helpful. For fatigue the medications most commonly used/tried are:

    - Provigil
    - Nuvigil
    - A.D.D. medications such as Ritalin, Adderall, ect.

    For weakness: Working with a Physical Therapist might be beneficial.

    One of the many symptoms I had during the diagnostic process and after was the loss of the majority of my mobility. I had bilateral leg weakness. My Neurologist told me the best thing I could do was to walk. When he said that I looked like this he said "I know you can hardly walk but walking will help."

    It took me a year to regain my mobility with a lot of frustration and tears. I am a very strong believer in exercise and currently weight train and use an Elliptical. I have benefitted from the knowledge and help of Physical Therapists 3 different times. My biggest struggle with this disease, from the beginning, is my mobility.

    Ive had this BINO for more than 8 months...
    I'm sorry Mark. It might improve or it might not I have had my INO for 2 years but as I said in a previous post my eye has "somewhat" adjusted or maybe I have, who knows.

    I have all the symptoms of MS.
    Be careful with this statement. I would really doubt this is true although it might feel like it to you.
    This disease can do much more than what is listed on most sites as "symptoms of MS."

    IDK do I have MS?
    I don't know either. You have 3 Drs. that say you do.
    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


      #3
      Rough road. Did your MS neurologist diagnose you with MS, or sometimes it's precursor? If so, then it may be worth starting. If not, then it would not be an option.

      If you were diagnosed, and uneasy about it, you can ask what criteria they are using (McDonald's) or is it their experience driving it.

      If not diagnosed, keep pushing for an answer, whether MS or otherwise.

      Lots of luck at your appointment.
      Kathy
      DX 01/06, currently on Tysabri

      Comment


        #4
        Hi hope you get some answers real soon, as Snoopy said being DX with MS isn't a simple tick of the box, we are all have the same and very different symptoms but just finding an answer can be a godsend.

        Again as Snoopy said (I should just quote Snoopy), the MRI's are a tool to help get answers, my latest MRI results showed the lesions shrinking slightly, but my symptoms getting a lot worse, when I saw these results I felt like a hypochondriac until my neuro helped explain.

        You need to find a Neurologist that specialises in MS, one that you trust and follow their recommendations , even if you don't have MS they might help to DX you, and I hope you find out you don't have MS I know that finding out answers can be half the battle but MS is no badge of honour it can be really tough at times, good luck Craig

        Comment


          #5
          Originally posted by pennstater View Post
          Rough road. Did your MS neurologist diagnose you with MS, or sometimes it's precursor? If so, then it may be worth starting. If not, then it would not be an option.

          If you were diagnosed, and uneasy about it, you can ask what criteria they are using (McDonald's) or is it their experience driving it.

          If not diagnosed, keep pushing for an answer, whether MS or otherwise.

          Lots of luck at your appointment.
          Hello. MS Neuro DX PRMS. On day 20 gilenya. Neuro Op DX BINO and PRMS. I have already accepted all this.
          Amazing how fast things change. Sucks.

          Comment


            #6
            Accepting a diagnosis can be a tough thing, but sounds like you have passed that. I questioned mine on/off for years, but always was forced to accept again, lol.

            Hope you are adjusting to Gilenya.

            Lots of luck.
            Kathy
            DX 01/06, currently on Tysabri

            Comment

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