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    #1

    Question

    Of course,I am still in limbo. I have umcoming appointments at a new nuero that specializes in muscular disorders. There going to do a nerve test I think.

    Also have appt with a pulmonologist, my regular doc thinks I am not breathing right. I had chest x ray and it came out fine so we will see. My PCP seems to think my problem could be connective tissue disease. i have been having more pain in my legs and arms near the joints.

    I was reviewing some of my results online and it said 20 Obands were identified in my csf fluid after my spinal tap.
    Does that mean anything at all.

    I have been going on with this for so long starting to feel depressed, and tired of just not knowing anything.
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    #2
    I don't know, not being a doctor and all. I am sorry it's taking so long to find out what is wrong. Have you had a MRI?

    Comment

      #3
      Originally posted by acaverly View Post
      I was reviewing some of my results online and it said 20 Obands were identified in my csf fluid after my spinal tap. Does that mean anything at all.
      O bands are significant because there are numerous different diseases that cause them to be produced. MS is only one of them.

      Most people don't have any O bands at all and a few otherwise normal healthy people have 1 or 2. Past exposure to different kinds of viruses can cause a person to have O bands even though the infection was successfully overcome.

      If there are O bands in blood or CSF they tell doctors what diseases to start testing for because there are a limited number of them that are known to involve O bands. If you've been in limbo a long time I'm guessing that your doctors have already evaluated you for all of the diseases that have O bands and they haven't come up up with anything definitive enough to diagnose you with any of them.

      20 O bands in CSF is a lot but there might be O bands in your blood too. To find out how many O bands are being produced in the central nervous system the number of bands in blood have to be subtracted from the number in CSF. So for example 2 O bands in CSF and 2 O bands in blood would be 2-2 or 0 (zero) O bands more in CSF than in blood. That points away from a disease that is more active in the central nervous system than in the body. But 2 O bands in blood and 4 O bands in CSF would be 4-2 or 2 O bands in CSF. That says that the disease is more active in the central nervous system than in the rest of the body. It still doesn't identify what the disease is tho. Other tests have to be done to determine that.

      Do you know how many O bands were in your blood? That might be important too. Again I'm guessing that if you've been in limbo a long time and you had O bands in your blood your doctors have probably already considered what that might mean. Here's a medical article about O bands in blood. It's 20 years old but still informative. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1014760/

      Considering how long you've been in limbo and how many different kinds of tests you've had done your doctors are going to have to be the ones to tell you what the significance of your O bands is and how they have followed up on it.

      Comment

        #4
        Yes several MRI's. Bu it has been a few months now.

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          #5
          an altrasound on your chest and arms

          you need to go to a Cardiovascalor and Uerologist doc . Stay away from any thing the Nero gives you it put me down quicker

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            #6
            I checkedy results and it said 20 o bands in csf and 20 in serum. It says not considered supportive of a diagnosis of ms.

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              #7
              Originally posted by acaverly View Post
              I checked results and it said 20 o bands in csf and 20 in serum. It says not considered supportive of a diagnosis of ms.
              Thanks for the update. As long as you have as many O bands in your serum as you do in your CSF, it doesn't indicate a problem originating in or operating primarily in the central nervous system. That includes meaning not MS.

              20 O bands in blood and CSF is significant so you'll have to ask your doctors what that means. I'm kind of surprised that this much time has gone by and your doctors haven't discussed this with you. The medical article I linked in my last post can give you some ideas for possible causes that you could (should?) ask your doctors about. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1014760/

              Comment

                #8
                Hi again.

                It has been a few years but decided to update. I was diagnosed with Sjogrens Syndrome in 2014. I still have issues with eyes. Diagnosed with intranuclear opthalmoplegia a couple years ago. It has never improved and lately headaches seems worse. causes of this condition still list either MS or trauma which I never had. Primary thinks I should have another MRI. Neuro Opthamology just seemed to give up.
                .

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