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Need advise... going to see Neuro # 2

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    Need advise... going to see Neuro # 2

    Hi everyone!

    Long story short,

    MRI from Jan 2012 shows:
    non specific scatterred foci (>20) of increased T2/Flair
    Excessive demyelination for someone of age group (35)
    Causes for demyelination require exclusion including primary(MS), ischemic(vasculitis,vasculopathy...) and infectious/inflammatory. Correlate clinically

    Symptoms: random numbness, "creepy crawly" feeling in head, hands/feet fall asleep at night, occasional muscle weakness in hands and legs, muscle twitches throughout body(every day), balance issues and lighthead which lasts for 2 months..happened twice this year.

    MRI July 2012 : no new lesions, lesions from previous MRI have not changed (however no contrast used).

    Neuro #1: thinks I should go back to family doc for further investigation as he does not believe my issues are caused from MS (he is NOT an MS specialist) or neurological issues.

    ENT thinks that issues are prob neurological...Neuro #1 doesnt.

    My fam doc has already tested for for Lupus/B12 def and RA, ANA...all done prior to second MRI all negative...

    So when my balance issues came back this summer after seeing my neuro..I thought why should I go back to him since he doesnt seem to wanna help...I'm tossing Neuro #1!!

    Just got a call from MS clinic (org appt was in 6months) they just called and have moved my appt for next Thursday...soooo relieved!!!

    ?? Do I tell Neuro #2 (MS specialist) about Neuro #1???
    Or should I just try and start from a clean slate. My family doc was the one who sent me for MRI#1...MRI #2 was req from neuro #1

    P.S. Has anyone ever had wrist and ankles swell when its really hot/humid??? I was icing during the summer heat and wasn't sure if anyone has also had similar symptoms?

    Thx for your time!

    #2
    My opinion;
    -1- have all labs, MRIs etc available for new neuro.

    -2- Do you tell? I would if it comes up, otherwise I see no need. In other words if s/he does not ask, don't tell.

    -3- Important, do NOT lie if asked.

    -4- You have to do what YOU feel comfortable doing.

    My first neuro I went to for suspected MS said he would not treat my MS if I had MS, so it was a no brainier. Did not bother mentioning it to future docs, and never felt guilty either. Same for other neuro previously sent to for neuro issues who ran one in office test and quit looking, really lame.

    Gomer Sir Falls-a-lot

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      #3
      Glad you are going to an MS specialist. An MRI may not change much in 6 months if at all. That is why most docs wait a full year to repeat one.

      Take both MRIs to your MS specialist for him/her to review. They may see something subtle in the gray matter, normal appearing white matter, or even characteristics of your lesions.

      This doctor is going to examine you differently than a regular neuro, so don't worry about the prior one. For sure tell him about it. You want your medical records to be truthful as you may need them for disability some day and they will go back through your insurance files.

      Just go in with a clear list of your symptoms, timeline, and when they come and go.

      I am happy you are getting this appointment! Let us know how it goes!
      Disabled RN with MS for 14 years
      SPMS EDSS 7.5 Wheelchair (but a racing one)
      Tysabri

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        #4
        ditto for what others said. I also suggest just stating the actual truth which is you are there for "a second opinion of what is wrong with you" (and BTW doc here are my MRIs, symptoms...)
        Cleverly disguised as a responsible adult...

        Comment


          #5
          Hi,

          Thanks for the replies. I almost cried when they called and moved my appt from March 2013 to next week! It's such a relief just knowing that I will be dealing with a great team at the MS clinic...was told that my first appt will last approx 2hrs...much better then the 10min from neuro#1

          I'll bring all my tests (MRI, EMG,VEMP) so Neuro #2 can view...and if he asks about Neuro #1 then I'll mention it.

          I'm alsmost certain that the clinic will want to do their own since no contrast was ever used.



          I'll keep you guys posted!
          thx again for your time

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