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    Question about white matter changes and diagnosis

    Hello... I havent been here in quite awhile. I Usually disappear for a year and come back ! Once I go into one of my flairs I Return. I just had about my 6th or 7th case of Optic Neuritis. Im getting so used to getting it now, it just seems to be a part of life now. So ofcourse this all started on about the first warm day on long island. So off to the neuro I go.
    Sooo neuro ofcourse says here we go again.. IV solu medrol, taper down of pred and lots of tests. My neuro had Diagnosed me and undiagnosed me numerous times. My MRIs have all been pretty much clear.Only my first one showed one lesion that could have been related to migraines. Im going through this for 4 years now. My VEP shows severe demyelination. Sooo I have all these tests done and call to get my results. The neuro's Asst tells me.. ok well your Brain MRI shows 2 areas of white matter changes with signal intensity enhancing. Which is unchanged since your MRI last July... problem is... I was told my MRI last year was normal. Soo I said to her.. Ummm are you sure you are reading MY MRI? She said yes its in your chart, also with your VEP showing severe demyelination worse than last years and also you are showing hearing loss now as well. Well you can imagine my shock. So just out of curiousity I said.. sooo what does the MRI report where it says impression say.. She says.. demyelinating process such as MS. I almost fell off my chair.
    So with an MRI stating 2 areas of white matter changes with signal intensity enhancements.. something to that effect with severely abnormal VEPs And numerous abnormal neuro exams will that enough to finally get me out of the dreaded Limbo Zone?????

    I will be picking up the report Monday so I Can go over it myself. I dont see my neuro until july 1st.
    Only in the darkest night can you see the stars

    #2
    Donna, it sure seems that you should be out of limbo with that. I would hope that he would get you on an immune modifier too. If not you need another opinion.

    -dawl
    10/2005 AFP/ MS?later:TN
    later:ADEM/MS,
    5/08 MS IVSM, Copaxone

    Comment


      #3
      ON is not fun and I only had it once. Has your neuro investigated divics disease which is characterized by repeated bouts of ON. Maybe worth a look. Good luck.

      Jo

      Comment


        #4
        Wow Donna~ HUGS!!

        Welcome back. I bet this MS chasing has been a journey plus some. So you have not yet been DX in all these years and have not been on DMDs either? Only steroids?

        It sounds like they got enough info now. Was your DX probable MS all this time?

        I too just got DX after many many years and a dx of benign..to maybe.. to no ..to yes.. to 2nd opin YES.

        What is the difference between VER and VEP tests?

        Stay with us on limboland check ins so we can support you ok?

        Warmly, Jan
        I believe in miracles~!
        2004 Benign MS 2008 NOT MS
        Finally DX: RR MS 02.24.10

        Comment


          #5
          thanks ladies... yes I have been tested for devics and my neuro has me getting the bloodwork again for it due to repeated ON and the issues of limb weakness and bladder issues. I was negative last time I was checked about 3 years ago.
          Jan... I will check in on the weekly Limbo check ins... I used to do that. I think I get frustrated with it all and from time to time just try to ignore whats going on with me and just live with it and not pay attention to it until I can no longer ignore it.
          So after all these years on the diagnosis merry go round as I like to call it, I wonder if I can stop the ride.
          I hope you are all feeling well .. and thanks for the replies!
          Only in the darkest night can you see the stars

          Comment


            #6
            ver and vep

            Sorry Jan... forgot to answer some stuff you asked... VER and VEP are the same think.. visual evoked response and visual evoked potential.. same test.

            Im sure youre relieved putting a name to whats been going on. As far as my diagnosis. I have been diagnosed and undiagnosed numerous times. I was told MS, Ooops.. MRI isnt saying that... repeatedly. I have also been diagnosed with Lupus than undiagnosed. My rheumy has believed from day 1 that this is either MS or NMO/Devics.
            Especially because of how many times Ive had ON. Auto Immune disorders seem to be such a melting pot of symptoms. They seem to mix nicely into each others diagnostic criteria which make it hard to differentiate!

            So we shall see, Ive been told before I was so close to Diagnosis by my Neuro only to have him say.. ok lets just treat your Symptoms but cant get the Dx until the MRI shows it.
            Only in the darkest night can you see the stars

            Comment


              #7
              donna, good luck to you on your journey. answers are like the decloaking device on startrek. it gives a certain peace of mind when you can see what you are fighting.

              Comment


                #8
                hi!!!!

                Hi Donna,
                I too just check in here when I'm having another neuro attack! I can't believe I just peeked in and saw your post.

                I sure hope you finally finally get the answer to this. I can't believe they didn't tell you the results of the mris from last year!
                Reminds me of my own advice, always get a copy of your results! Which reminds me I've got some requests to make too.

                I'm dx'd with "central demyelinating disease of unknown eitology" (sp?)....same boat, till it shows up on the MRI.....ugh

                I'm sorry to hear you are still suffering with this neuro business, but will keep you in prayer.
                Hope your kids are doing well.
                pm me!
                take care of yourself. I'll be watching for news from you.
                hang in there girl!
                love
                Laura
                Nov 2011 Muscle Biopsy Result: "Not enough info to further classify the disease" demyelinating disease of unknown origin

                Comment


                  #9
                  howdy stranger

                  Laura ... lol that was my last diagnosis, demyelinating disease of CNS unspecified.. how are you? I was looking around here yesterday to see if you were still posting and active on here. How are you feeling?
                  Yes we are alike.. when we arent feeling well we tend to gravitate back to here. Let me know how youve been doing... the kids are doing ok... my son has had a very up and down year.. but hes doing ok at the moment... thanks for asking.. what about yours? hope to catch up with ya soon xox donna
                  Only in the darkest night can you see the stars

                  Comment


                    #10
                    Originally posted by DonnaT521 View Post
                    when we arent feeling well we tend to gravitate back to here.
                    Well stated...I pretty much feel like crud every day and I'm pretty much here every day! I guess MiSery loves companyl
                    Tawanda
                    ___________________________________________
                    Diagnosed with Multiple Sclerosis 2004; First sign of trouble: 1994

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                      #11
                      awww sorry you feel that way everyday... I try to ignore the stuff I can , but certain days we cant ignore it! and Tawanda lol.. fried green tomatoes right? love it!
                      Only in the darkest night can you see the stars

                      Comment


                        #12
                        Originally posted by DonnaT521 View Post
                        awww sorry you feel that way everyday... I try to ignore the stuff I can , but certain days we cant ignore it! and Tawanda lol.. fried green tomatoes right? love it!
                        (((Donna)))
                        Thanks! I probably had this disease a good 10 years before I was diagnosed, and certainly there were tons and tons of good days for me when it was milder. I was very stubborn about seeking a diagnosis and waited too long...perhaps had I gotten to the truth, and on a DMD back then, things would be different now.

                        Yes, you are right about the "Fried Green Tomatoes" reference! I am also thinking of changing my quote to a line from my daughter's "Finding Nemo" DVD, "Just keep swimming! Just keep swimming! Swim-ming, swim-ming, swim-ming!" (Dori to Nemo's distraught dad)

                        Here's to staying afloat...all of us!
                        -T
                        Tawanda
                        ___________________________________________
                        Diagnosed with Multiple Sclerosis 2004; First sign of trouble: 1994

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