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Brain Lesions but negative LP

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    Brain Lesions but negative LP

    30 something Female, I didnít realize there were so many others out there stuck in limbo as well. This is certainly a frustrating situation to be in. Iíve had a few weird neurological things happen since spring of this year, but nothing that made me think something was wrong. What ultimately led me to get the brain MRI was double vision. Iíd have the double vision for awhile, it just suddenly got worse. I had my brain MRI in Sept. that showed 3 lesions suggestive of demyelinating disease. Plus optic nerve enhancement. It didnít appear that any of the lesions were new, contrast was used.

    Saw a neurologist at big teaching hospital, who basically told me right away it's probably MS but we need to rule out a few other things and run more tests. He basically dismissed the first MRI and surprisingly my insurance agreed to another brain MRI as well as my spine. Second MRI showed the same lesions in the brain and descending cerebellar tonsils 5mm. The spine was clear. I also had a lumbar puncture that was negative. Here is where things went wrong though. I was told Iíd follow up after all the tests were completed. I waited several weeks for the lumbar puncture results and never heard back. I can see a lot of the CSF stuff online in my patient portal but there is no IG index or band test studies! I mean I hope they did that stuff when I had the lumbar puncture but I donít know.

    Eventually I got a hold of the doctors office and the nurse was super rude to me. (This is where I add that Iím also an RN and that you shouldnít tell people they are crazy!) So the nurse proceeds to tell me all the testing was negative and that I donít have MS. Like any normal person, I had lots of questions and asked if the doctor was going to tell me what was going on. Should I be making another appt to come in to see him to discuss results? What about the descending cerebellar tonsils? The nurse said sheíd call me back in a few days after discussing it with the doctor. She called me back as promised and proceeded to tell me that again its not MS and (word for word here!) that the symptoms Iím having all probably all in my head! Oh and I never need to worry about those brain lesions because they wonít get worse! At that point I just said forget it, which leaves me to where Iím at nowÖ


    Here is where Iím super confused, second MRI showed the descending cerebellar tonsils. That is suggestive of a Chiari Malformation. Apparently chiari can be a mimic for MS, but doesnít cause lesions. I looked through all the medical journals I have access to at work and couldnít find any connection between chiari causing lesions. Chiari also appears to be misunderstood by a lot of doctors. If the descending cerebellar tonsils are less than 5mm than its not true chiari etc. It is also quite common for the symptoms to show up in adulthood. Chiari also causes a lot of the same symptoms as MS, so Iím super confused. Iíve had constant tingling in my left foot / leg for the past week, is this potential MS or just chiari?

    Thankfully I kept an appt with a more local neurologist and will follow up with that in January. All I really want out of that is an opinion on when to repeat an MRI and if this is a clinically isolated event, should I be treating this now? This neuro is the one I originally wanted to see and was recommended by a few doctors at work. The other super frustrating thing is that I was hoping to have the surgery to correct my double vision before the end of the year since Iíve met my deductible. Nope, the surgeon that corrects strabismus (eye muscle imbalance) instead gave me a dose of steroids and didnít want to touch me for awhile due to the lesions.

    #2
    Originally posted by Cocorina View Post
    The other super frustrating thing is that I was hoping to have the surgery to correct my double vision before the end of the year since Iíve met my deductible. Nope, the surgeon that corrects strabismus (eye muscle imbalance) instead gave me a dose of steroids and didnít want to touch me for awhile due to the lesions. [/FONT][/COLOR]
    Hi Cocorina and welcome to MSWorld.

    I was going to suggest you get another opinion but it appears you are already set up with another Neurologist. Awesome!

    I would like to suggest caution about surgery for double vision. Basically, they cut the muscle which is rather serious especially because you don't know the actual cause. I have double vision due to MS which is called Internuclear ophthalmoplegia (INO). I had one Ophthalmologist suggest getting surgery and two other Ophthalmologist's, one being a Neuro-Ophthalmologist that said, absolutely NOT.

    You can try prisms in eye glasses which might help.

    Unfortunately, I would not be of any help on the other frustrations you are having. It can take time to be diagnosed with MS and sometimes what is believed to be MS turns out not to be MS.

    Best wishes.
    Diagnosed 1984
    ďLightworkers arenít here to avoid the darknessÖthey are here to transform the darkness through the illuminating power of love.Ē Muses from a mystic

    Comment


      #3
      Hi Cocorina ~

      I can see why you're frustrated!

      It certainly isn't the 'norm' for a neuro to order tests and then not schedule a follow-up appointment.

      Hopefully you have a better experience with the neuro at your January appointment.

      Let us know what you find out.

      Good luck!

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

      Comment


        #4
        Hi Cocorina,

        Can you call the office back and schedule a follow up appointment with the front desk? Or better yet, can you ask your PCP to contact the neurologist's office to get an appointment? It was the neuro that ordered the testing and it is his responsibility to go over the results with you. This way he can discuss the next steps and come up with a plan, even if that means to take a watch and wait approach or dismiss you from his care.

        The way the nurse treated you is inexcusable and worth reporting. I was told many times that my symptoms were all in my head! It was infuriating. Call patient relations at the hospital and file a complaint about the doctor and the nurse.

        Is your double vision neurological or is it from long standing strabismus? I'm a little confused on that part. Double vision was one of my first presenting neurological symptom. I have vertical diplopia from a cranial nerve palsy and a skew deviation.

        As far as the Chiari goes, I have low lying cerebellar tonsils too but no one was ever too worried or concerned about it. It is mentioned on some of my MRI's but not on others. I think an appointment with a neurosurgeon would be the best way to have the Chiari assessed.

        Keep advocating for yourself and good luck with the neurologist in January but follow up with the current one.

        Comment


          #5
          I believe the original neuro that I saw basically drops you as a patient after everything is negative. At this point I have no desire to ever go back there. Following up with my primary care provider is sort of questionable too, as she is out on medical leave herself. I basically only see her to keep my spot as a patient once a year, so she knows nothing about this. And while she is a doctor and has more knowledge than me, I don't think she is very good if that makes sense.

          I'm not sure my eye issue is really strabismus or not. The first ophthalmologist that I saw mentioned how much worse the esotropia was when he followed up with the MRI results. There were about 3 weeks in between my first first visit and the follow up. He is the one that sent to me to the adult strabismus ophthalmologist that suggested the steroids. Since then I've noticed my other eye turns in too. I do have one pair of prism glasses but most of the time I still see double with them. I've basically given up the idea of watching tv as a single image.

          Comment


            #6
            Originally posted by Cocorina View Post
            [COLOR=#000000][FONT=Arial]

            Thankfully I kept an appt with a more local neurologist and will follow up with that in January. All I really want out of that is an opinion on when to repeat an MRI and if this is a clinically isolated event, should I be treating this now?
            I'm glad that you have another appointment scheduled. Please be sure that your new neuro has access to your current MRI results.

            It is not uncommon to be in limbo, unfortunately -- sometimes for a long time. There are many scenarios that can cause lesions and there are many illness that mimic MS. I had two "probable" diagnoses prior to being diagnosed with MS, even after going to Mayo Clinic in Rochester for two weeks. Even highly qualified doctors can't always make an accurate diagnosis quickly. Over time, it is likely that your MRI's will change in appearance, and you'll have more clinical data. Those things will make a diagnosis easier.
            ~ 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.

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