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    Limbo - question about ANA+

    Hey everyone - this is my first post and I'm happy to have stumbled upon this community. I currently have a lot of MS symptoms, but also have low B12, so we started with B12 injections because that's obviously an easier fix. However, in my research about B12 deficiency, I've learned that it can be extremely harmful if left untreated. I've been having some of my symptoms for 10+ years, so now I'm a little freaked out about that. My intrinsic factor test was normal, and I have no other underlying conditions/diet which usually lead to a B12 deficiency.

    I have an MRI scheduled for next month with a follow-up with my neuro on 12/30, so hopefully I'll have a much better picture at that time. My question comes from my recent bloodwork. I had high levels of ANA (1:640), but negative for all of the other auto-immune disorders that you can rule out by the bloodwork. Some people can test ANA+ and not have any underlying issues, however those people usually have MUCH lower numbers than that. In my research, I've found things that state people with MS often test for higher levels of ANA, even though I know that is not an official diagnostic tool, there has been some correlation. So, I'm just curious if anyone else has had this experience where ANA was high and later found out they had MS.

    I'm a lawyer so of course ever since I started this diagnostic process in June, I've spent my free time researching because that's what we do: over-research and over-analyze. It's a blessing and a curse.

    Again, I know this isn't a diagnostic tool used for MS, but I've found some research that shows a correlation so I'm just trying get a feel for how common this may actually be. I think for me personally, my biggest fear is living without a diagnosis for years and years, especially since I've had symptoms for a long time already. Mainly just looking for a community and sounding board. I have a gazillion more questions, but I'm trying my best to be patient for 12/30.

    #2
    Hi BGSNOW and welcome to MSWorld.

    At this time there is no blood work results that can indicate MS, including the ANA. Some who have MS also have a positive ANA and some do not.

    I have had MS a very long time and my ANA has always been in the normal range.

    Best wishes on your diagnostic process.
    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
      Thanks for the response.

      I was clear in saying that I know it isn't used in diagnostics. I'm well aware of that. Again, I've done a ton of research and was just looking for some personal experiences.

      Comment


        #4
        Originally posted by BGSNOW View Post
        Thanks for the response.

        I was clear in saying that I know it isn't used in diagnostics. I'm well aware of that. Again, I've done a ton of research and was just looking for some personal experiences.
        I did understand what you wrote. And I gave you my personal —- My ANA has always been normal.

        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 BGSNOW View Post
          So, I'm just curious if anyone else has had this experience where ANA was high and later found out they had MS.
          Hi BGSNOW and welcome!

          In answer to your question, yes - that was my experience. I had an ANA test with high level many years ago (in the mid to late 80's) and it's been so long know that I can't remember why. Testing came back positive and was told I had Lupus, even though I didn't have any classical symptoms.

          Fast forward to 2009 when I was finally and officially diagnosed with MS after years of symptoms in which I was misdiagnosed with other conditions/or Dr didn't know what was wrong. It was a long and trying journey for me.

          Good luck with your upcoming MRI and appt.
          Please keep us informed and keep well!
          1st sx '89 Dx '99 w/RRMS - SP since 2010
          Administrator Message Boards/Moderator

          Comment


            #6
            Originally posted by Seasha View Post

            Hi BGSNOW and welcome!

            In answer to your question, yes - that was my experience. I had an ANA test with high level many years ago (in the mid to late 80's) and it's been so long know that I can't remember why. Testing came back positive and was told I had Lupus, even though I didn't have any classical symptoms.

            Fast forward to 2009 when I was finally and officially diagnosed with MS after years of symptoms in which I was misdiagnosed with other conditions/or Dr didn't know what was wrong. It was a long and trying journey for me.

            Good luck with your upcoming MRI and appt.
            Please keep us informed and keep well!
            Hi Seasha - thank you for sharing your experience. I'm glad you finally got an accurate diagnosis. That's what terrifies me the most - not knowing. I'm glad my doc ran all of the tests for the diseases to rule out, but it just seemed surprising to see the ANA titer number so high otherwise. I'm healthy as a horse - no other known conditions/diseases, all numbers on all other bloodwork are perfect, with the exception of being on the low end of normal for B12. I've seen no improvement in symptoms since starting the injections for that, though I know that can take quite a while and it has only been about 6 weeks for me.

            I will certainly keep you updated! Just want to fast-forward because the waiting sucks!

            Comment


              #7
              I had Optic Neuritis in 2013. I declined an MRI at the time (long story). Anyway, it is now apparent, since being officially diagnosed just this month, that I have had MS since then. I have had blood work done a number of times since then and my ANA has always been negative.
              "Ring the bells that still can ring. Forget your perfect offering. There is a crack a crack in everything. That's how the light gets in.
              ~Leonard Cohen


              DX November, 2020. Ontario, Canada

              Comment


                #8
                Originally posted by Pistachio View Post
                I had Optic Neuritis in 2013. I declined an MRI at the time (long story). Anyway, it is now apparent, since being officially diagnosed just this month, that I have had MS since then. I have had blood work done a number of times since then and my ANA has always been negative.
                Hi Pistachio - thanks for the reply and sharing your experience.

                I actually had negative ANA from PCP, but then went to specialist only a couple of weeks later, and they did a different test that came back high. Since then, I've learned that the type of test can make a difference in accuracy. After reviewing both tests, it seems that the negative one was the not-as-good one, and the other was the much more trusted.

                I'm just super intrigued by the fact that one was not positive at all - even in low levels - and the other registered high. No change in health or diet or anything other than about 10 days between the two test.

                Science is weird, but awesome.

                Comment


                  #9
                  Welcome BGSNOW. I was a business systems analyst/data analyst, so I can relate to over research and over analyzing! I had to laugh when I saw your lawyer comment.

                  As for the ANA, I have had no issues. As neuro said, bloodwork was "unremarkable".

                  Hoping treating the B12 deficiency resolves fr you. As hard as it is, try to take it a day at a time. Hard for those of us that like to research and analyze, but sometimes, for our own health, we need to do that.

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

                  Comment


                    #10
                    Originally posted by BGSNOW View Post

                    Mainly just looking for a community and sounding board. I have a gazillion more questions, but I'm trying my best to be patient for 12/30.
                    I'm a little slow in welcoming you to the boards, but . . . , welcome!
                    I hope you find helpful information following 12/30.

                    ~ 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


                      #11
                      So, I had my first MRI yesterday. Got the report in my file today, and of course I'm over-analyzing it in hopes for answers before going on 12/30 for my follow up. It did show one t2 flare hyperintensity - which I know can mean a lot of different things. And the fact that MS lesions can present anywhere in the CNS isn't helpful. I know I just need to be patient, but I'm not very good at that. Will update after 12/30.

                      Comment


                        #12
                        Originally posted by BGSNOW View Post
                        So, I had my first MRI yesterday. Got the report in my file today, and of course I'm over-analyzing it in hopes for answers before going on 12/30 for my follow up. It did show one t2 flare hyperintensity - which I know can mean a lot of different things. And the fact that MS lesions can present anywhere in the CNS isn't helpful. I know I just need to be patient, but I'm not very good at that. Will update after 12/30.
                        Thanks for the update, BGSNOW.

                        And yes, please let us know what your neuro says at your follow-up appointment.

                        I'm sure it's not easy, with what you're dealing with, but hopefully you can enjoy the holiday.
                        PPMS for 22 years (dx 1998)
                        ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

                        Comment


                          #13
                          Originally posted by KoKo View Post

                          Thanks for the update, BGSNOW.

                          And yes, please let us know what your neuro says at your follow-up appointment.

                          I'm sure it's not easy, with what you're dealing with, but hopefully you can enjoy the holiday.
                          Thanks, Koko! I'm doing my best. Hope you enjoy your holiday, too!

                          I forgot to mention that MRI was just on brain - no spinal imaging yet. Also, after 7 weeks of B12 injections, no change there either.

                          Comment


                            #14
                            Whoa, I clearly can't count. We're at more like 10 weeks of B12 shots now....time flies when you're having fun, right? LOL.

                            Comment


                              #15
                              Originally posted by BGSNOW View Post
                              Whoa, I clearly can't count. We're at more like 10 weeks of B12 shots now....time flies when you're having fun, right? LOL.
                              Yes, it certainly does!

                              PPMS for 22 years (dx 1998)
                              ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

                              Comment

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