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Answers from a neuro. Having a hard time copying my MRI... maybe later.

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    Answers from a neuro. Having a hard time copying my MRI... maybe later.

    ---------------------
    From: MARTHA ARNOLD
    To: Rodney Quinn MD - FD-Neurology (FD-Neurology - Nurse/Back Office)
    Sent: 02/01/2019 09:12 a.m. CST
    Subject: Forgot to ask....
    Thank you for your message. It has been successfully sent to the appropriate care team.
    I knew this would happen even with my list of questions. Sorry.

    I meant to ask about any possible meds to help with falling asleep. I still have just a few Clonazepams that I have been cutting in half and they work very well. But I know you don’t like to offer them anymore. I’ve never had any reactions to them. But you might have a better idea.

    About the supratentorial leukoariosis.... Carol wanted me to ask about the possibility of tiny strokes. You didn’t mention that so I assumed that is not what is going on. I have not had any stroke-like symptoms except maybe all this lightheadedness and the numbness around my face. But I’ve had all that for many years and those things are what brought me to the diagnosis of MS. By the way.... if you had been the first doctor to see me way back, would you have dx MS? I always thought Dr. Sreepada had it right, but now I wonder. Maybe I’m just a very lucky person to have this minor case.

    And about the damage that has already been done... do I understand that right? The lesions you showed me on the MRI actually are most likely MS lesions?? Sorry for the confusion on my part.

    My primary believes I also have TMJ since I grind my teeth at night. Could explain the pain in my jaw. And I get sporadic events of Trigeminal Neuralgia... ouch. The ringing in my ears is constant.. on the right. But it has started in the left too occasionally. We started to talk about that. And I have been choking like crazy... could be sinus/allergy or Gerd I think. I don’t imagine this is some new MS thing.

    I do wonder about the dizziness when I eat. I’ve had a few times when I thought I would black out, but never did. Scary stuff. Sorry to bring up so many questions. I don’t mind so much being "sick", but I am OCD about wanting to know what is happening. Speaking of OCD.. I am still pacing around, constantly moving things around, back and forth.. lots of action. Started before Sam died. Still have some anxiety.. especially around people.. even my kids. I love them, but I just get so antsy around people at times. Probably why I forgot to talk to you about a few things.

    Well, I think that’s it. Will get on those tests by next week. Thank you so much for taking the time to show me my MRI in detail. And for checking my shoulder. I know you didn’t have to do that.

    Marti


    These are my neuro's answers to my questions that I sent him AFTER our visit. I always forget things, even with my notes.
    1. Latest evidence shows that combining short and long acting melatonin at the hour of sleep is effective in many individualls.
    The melatonin immediate release induces sleep quickly.
    The melatonin extended release has longer duration of action to promote sleep after the immediate release has worn off.
    Common adverse effects of melatonin include hypothermia, sedation, somnolence, and fatigue.

    2. MRI scan and all radiologic tests give images based on the physical proprerties of the brain matter (subatomic particle density, density of tissue, water content, etc.) It is always important to remember that radiologic images do not make pathologic diagnoses (diagnoses based on the appearance of tissue appearance under a microscope, for which biopsy or autopsy must be done (this is often not practicle in daily medical practice).

    3. The leukoareiosis lesions are not strokes. Medical research from correlative studies between MRI brain scans and brain neuropathology slides from autopsy has shown that where these MRI lesions are located, sometimes nothing at all can be found in the pathology of the brain at autopsy.

    4. Evidently many conditions cause nonspecific white matter abnormality.

    5. The nonspecific white matter changes are abnormal, but could be seen in a variety of disorders including consequences of birth related complications, immune responses to viral infections or immunizations in the past, traumatic brain injuries, autoimmune vasculitis, antiphospholipid antibody syndrome, neuroborelliosis, migraine, arteriosclerosis and a variety of other conditions as well.

    6. We will never know whether MS caused these lesions and has now gone into remission, or whether they were ever due to MS in the first place.

    7. The radiologist says that not all of the strict criteria for a radioligic diagnosis of MS have been met, and that the lesions are nonspecific.

    8. We can say that the scan was very encouraging because no definite evidence of any new disease activity is identified.

    9. The TMJ diagnosis is interesting and important, since proper treatment of that could help you to feel better.

    10. It is correct that the pacing, and other symptoms described are likely to be symptoms of anxiety.

    11. After we get results of the recent tests, we can consider treating anxiety.
    R. Quinn, M.D.
    Marti




    The only cure for insomnia is to get more sleep.

    #2
    Hi Marti - sounds like you got a lot of questions answered this time, but #7 perplexes me.

    7. The radiologist says that not all of the strict criteria for a radioligic diagnosis of MS have been met, and that the lesions are nonspecific.

    Does this mean you never got a confirmed dx of MS? What is your take away? CIS maybe?

    It's encouraging to read that there is no new activity and you haven't had any strokes! I hope you can follow through and address your anxiety.
    1st sx '89 Dx '99 w/RRMS - SP since 2010
    Administrator Message Boards/Moderator

    Comment


      #3
      Originally posted by Seasha View Post
      Hi Marti - sounds like you got a lot of questions answered this time, but #7 perplexes me.

      7. The radiologist says that not all of the strict criteria for a radioligic diagnosis of MS have been met, and that the lesions are nonspecific.

      Does this mean you never got a confirmed dx of MS? What is your take away? CIS maybe?

      It's encouraging to read that there is no new activity and you haven't had any strokes! I hope you can follow through and address your anxiety.

      I was diagnosed back in 2001 after my first MRI. I had several episodes of weird symptoms over years and then weeks apart. My last several MRI's say pretty much the same thing. Either demyleniating or... something else, but all the doctors I've had over the years agree with the MS dx. I've always been kind of confused about it too. I've been treated for MS since 2001, then discontinued the Copaxone a few years ago because of strange side effects. I seem to be doing well enough without it. My worst problems are the continued dizziness and extreme fatigue. Some numbness and tingling and TN. Now they think I have TMJ. Not sure about that. Getting older doesn't help... only muddies the waters even more.
      Marti




      The only cure for insomnia is to get more sleep.

      Comment


        #4
        Yeah all bets are off as we get up there in age, lol.

        I loved reading his responses and also felt very thorough and thoughtful to have answered so much in detail. #3 was especially interesting to me. It sounds like they can see areas of damage on MRI that are common with or attributed to MS and yet not upon autopsy. Interesting, tricky disease for sure.

        Just curious, have you ever done intensive therapy such as DBT or CBT for the anxiety? Research supports it as being helpful and definitely less concerning than the benzodiazepines.

        His answer about melatonin was also especially interesting as many I know don't have a problem falling asleep but with sustaining sleep aka early awakening so the extended release, didn't even know it came in that formulation, sounds like an excellent option.

        Thank you for sharing!
        He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
        Anonymous

        Comment


          #5
          Originally posted by Jules A View Post
          Yeah all bets are off as we get up there in age, lol.

          I loved reading his responses and also felt very thorough and thoughtful to have answered so much in detail. #3 was especially interesting to me. It sounds like they can see areas of damage on MRI that are common with or attributed to MS and yet not upon autopsy. Interesting, tricky disease for sure.

          Just curious, have you ever done intensive therapy such as DBT or CBT for the anxiety? Research supports it as being helpful and definitely less concerning than the benzodiazepines.

          His answer about melatonin was also especially interesting as many I know don't have a problem falling asleep but with sustaining sleep aka early awakening so the extended release, didn't even know it came in that formulation, sounds like an excellent option.

          Thank you for sharing!

          I don't know what DBT and CBT are, but I've never had treatment or therapy for my anxiety. I've always had a hard time falling asleep. The last couple of years I've had less sleep.... not sleeping more than 4 or 5 hours at a time in general. I didn't know about the different kinds of Melatonin either. And yes, all of my MRI's have been very detailed.
          Marti




          The only cure for insomnia is to get more sleep.

          Comment


            #6
            Medication is only one component of managing anxiety with SSRIs generally being first line. Many don't want to put the time and effort into therapy but the results and growth can be amazing.

            https://www.anxiety.org/dbt-dialecti...ompared-to-cbt
            He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
            Anonymous

            Comment


              #7
              Originally posted by marti View Post
              My worst problems are the continued dizziness and extreme fatigue.
              marti

              I wonder if taking care of the insomnia problem and getting regular, decent sleep for a good while, would then help to alleviate the anxiety, dizziness, and fatigue.

              So far, for the most part, I have no problems sleeping on a regular basis. But, on the rare occasion that I don't get enough sleep (for one reason or another), I will suffer with anxiety, dizziness, and fatigue the following day as a result.

              Can't imagine being sleep deprived on a regular basis.

              In any case, thank you for sharing your neuro Q and A with us.

              Take Care
              PPMS for 26 years (dx 1998)
              ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

              Comment


                #8
                Originally posted by KoKo View Post
                marti

                I wonder if taking care of the insomnia problem and getting regular, decent sleep for a good while, would then help to alleviate the anxiety, dizziness, and fatigue.

                So far, for the most part, I have no problems sleeping on a regular basis. But, on the rare occasion that I don't get enough sleep (for one reason or another), I will suffer with anxiety, dizziness, and fatigue the following day as a result.

                Can't imagine being sleep deprived on a regular basis.

                In any case, thank you for sharing your neuro Q and A with us.

                Take Care

                I've asked that same question. Which comes first.. the insomnia or the dizziness?? We've tested for other things so no real answers for this so far. I've had insomnia since somewhere around 1988. It's torture. I absolutely cannot get to sleep without a little helper most nights. Once in awhile I get lucky. Thanks so much.
                Marti




                The only cure for insomnia is to get more sleep.

                Comment

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