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feeling panicked and frustrated

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    feeling panicked and frustrated

    So some of you may have already read my story.
    Last January I started working out a lot was getting some headaches and had some hand problems some tingling etc - but it would come and go... so of course doc orders MRI...MRI comes in with non specific white matter lesions about 10 on one side and 15 on the other...
    then they sent me for another 3 months later to do again this time of my spine and brain with contrast...
    no enhancing lesions and no new lesions. did another 6 months after again - no new or enhancing lesions....

    SO MRI's have been stable since last January. They tell me the lesions don't look like MS. However they sent to an MS specialist in Seattle. SHe took a detailed history and wants to keep track of me for 5 years. I have bladder issues where I can hold my pee but once I start I can't control the pressure of my flow at all. It started in my 20s after I had each baby - my toes were numb for months ...

    I've had brain fog issues big time - that lasted for a month - I could not remember my husbands phone number daily....

    Anyway for the last several months - I've just had some arm/hand weakness and so sure enough in May I had an EMG - it was normal...just two weeks ago I had another and the Ortho agreed I had hand weakness and that he thought it seemed to come from my CNS - repeated the EMG and it was normal just as he suspected because it is in the CNS according to him.

    My neuro saw me and has just recently sent me to Physical Therapy. I am just starting this.

    Bumped into my neuro today as I was bringing coffee to my husband (another physician) with my kids and he said "yes lets do the LP and then we don't have to think about the problems anymore - we can just forget about it"

    He told my husband another physician - that he does not believe it will be positive for MS...my husband wants to do the LP so we don't have to wonder anymore.

    SO I guess it's good but why is my hand progressively getting worse???

    On top of it now I'm stressed out about the LP - I've had epidurals and I can't stand the feeling. YUCK!

    #2
    MS is one of the most difficult conditions to diagnose.
    It can take years for a diagnosis.
    Go ahead and take the LP. It is bad, but not horrible.
    Dont take any aspirin for a few days beforehand.
    Make sure you have a family member drive you home, and stay with you for about a day. Maybe your mother, father, or sister. Your husband may or may not have to work. If he has the day off, all the better.
    I liked to drink coffee for the headaches afterwards. I used Tylenol 500 mg for the pain. I was able to return to normal duties within 2-3 days.

    Just because they may tell me in a couple of months that I don't have MS at this time does not mean that I won't have it in 5 years.

    We have a feeling that we have what we have.
    On the other hand, if the doctor tells me that I don't have MS, I will rejoice and live my life to the fullest.

    Maybe go on a few trips.
    Get my insurance in order.

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      #3
      Hi Meeshkap,

      Other than my hubby not being a doc..we share many similarities! I too built my home...I was the general contractor and interior designer..it takes a lot out of a family when building a home(with 3 kids!)..can be very stressfull at times..but I really enjoyed doing it!

      In October 2011 went to doc because of dizziness...got sent for a brain MRI..showed about 8 lesions..nothing that the neuro was concerned about..then May 2012 had numbness and weakness in left and sometimes right arm...did an EMG with another neuro who said it was carpal tunnel...went to an MS specialist who looked at my EMG report and said it wasn't carpal!!!
      Fast forward...Since Jan 2012 till present I've had 5 MRI's!!! Brain is still the same!!
      Been diagnosed with TN in Jan 2013
      But my hand is getting worse!!

      Just went to a spine MRI last week so I should hear from them soon...I'm going to ask neuro again about my hands.
      I'm in constant pain..and my hands falls asleep at night all the time!

      Please keep us posted as to what the LP results are..and if you get any info about your arm as well!

      It's so frustrating when we are getting worse and have no answers.
      I had bad experience with epidural too...but if I were you..I'd do the LP
      If nothing shows up on my spine MRI..I'm going to stop looking for answers and just have my docs give me meds to help with symptoms.

      I wish you all the best! And that you get some answers soon!

      Take care,
      Minnie76

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